Cherie is not only a registered nurse who happens to have MS, she is also one of about 500 nurses world wide who is classified asa Multiple Sclerosis Certified Nurse by the Consortium of Multiple Sclerosis Centers (CMSC)and the International Organization of Multiple Sclerosis Nurses (IOMSN).She has been an RN since 1973, was diagnosed in 1994, and received her MSCN Certification in 2003.Since 1999, Cherie has operated a home based Patient Advocacy business helping people identify the questions needed to be asked of their Health Care Team.
Additionally, she fields questions from people with MS all over the globe when it comes to symptom management, side effects of medications used for Multiple Sclerosis, and diet and exercise tips for the person living with a chronic illness.
OR, you canvisit our MS Blog where you can find the category for "Ask the MS Nurse". There, you can leave your questions, as a comment, and Cherie will respond. You can do this annonymously or identified.
New articles from Cherie, will be posted here each month. Check back regularly.
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Aging With MS
By Cherie C. Binns RN BS MSCN
Last week, I had the opportunity to participate in a Town Hall Discussion on Aging in Multiple Sclerosis presented by the IOMSN (International Organization of Multiple Sclerosis Nurses). Marijean Buhse, PhD RN NP MSCN was the featured speaker. As a Nursing Researcher and faculty member at Stonybrook School of Nursing on Long Island, she has spent several years observing aging patterns in the MS patient. I will provide a link at the end of this article so that those who wish may listen to her presentation on Podcast.
One of the things that she said that really struck me was that most of us living with MS, will live with the condition for more than 50 years before we die. She said that at least 90% of us will live a lifespan that meets or exceeds that of our age group in general. HOWEVER, those of us with a Chronic illness such as MS or Lupus or RA are only now being looked at as Aged NOT at age 65 or 70 but starting as early as 55 because of the long term strain on our bodies from having a chronic illness and also from the aging of the kidney or liver from processing the symptom management and disease modifying treatments to improve our quality of life. For us, this may mean Drugs are not metabolized as safely or efficiently and we may need lower dosing or avoidance of certain substances altogether.
From data bases available to us, Dr. Buhse stated that in 1964, 9% of people with MS (PWMS) were over the age of 65. As of 2010, 25% of us are now over the age of 65. At this point in our lives, we tend to have more visual deficits, cognitive issues, bladder problems (especially for women) , slowing of the GI tract and co-morbidities such as high blood pressure, diabetes, elevated cholesterol than our non-MS counterparts.
We often have fewer friends because as our activity level changes we may no longer be included in the theater or golfing or dinner groups that once were a part of our lives. Accessibility may be an issue to doing things we enjoy, so the friends we enjoyed those activities with often fall away and contact is minimized, if not lost altogether. Also at this age, all of us have friends who have been lost to heart attacks, cancer, accidents. As a result we tend to be lonelier and that often will lead to depression.
In her presentation, she discussed side effects of medications to manage spasticity, cognition, constipation, depression, bladder problems and how all seem to pile atop each other to magnify side effects. Therefore her recommendation is to start low on dose of any new medication and go slowly when increasing dosing. She also is a great proponent of using the least expensive medication to treat a problem in this group of patients as there are generally so many medications being utilized that cost is prohibitive, especially in patients receiving Medicare Drug coverage. This is especially true if one is on a DMT (Disease Modifying Therapy) which can cost thousands of dollars each month.
What surprised her when she began working with this age group of PWMS was that only 40% were on a DMT. Of the remaining 60%, a majority were told by their neurologists that they could no longer be helped by medication and refused to continue prescribing. In a few instances, insurance companies had denied coverage for DMTs past the age of 65. This is a situation that concerns her greatly and she implored the nursing community audience to act as advocates to keep legislation on the table to provide medication that either the patient or the physician sees as necessary with no age bias. She did say that compliance with taking the DMT was at or near 100% in this older group versus about 60% in the 30-40 age range group. Her theory was stated as (paraphrased) the older person with MS knows what a relapse can do to their quality of life and will do anything in their power to avoid one. They’ve been there!
One other point she emphasized was the importance of daily exercise in anyone with MS. “Just Move it!” Do anything that gets you moving and keeps you moving. And she stressed that smoking is the single greatest common factor in decline in Multiple Sclerosis and urged all of us to stress that our patients have stop smoking programs and support offered as a primary treatment as they move toward wellness with Multiple Sclerosis.
To listen to the Podcast of her talk and the nursing discussion that followed, go to this link
For articles written by Dr. Buhse, here are links you may use:
By Cherie C. Binns RN BS MSCN -- February 15, 2012
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I receive a quarterly publication for MS Nurses entitled “Counseling Points” which may be found on the web at www.counselingpoints.com. It is written by MS nurses for MS nurses to assist them in patient communication in the clinical setting of the MS Clinic. The Winter issue for 2011 was entitled , Changing Treatment Paradigms in MS and dealt the fact that as we work with disease modifying therapies (DMTs) over time, one of the findings is that most of our first line therapies (Interferon Beta 1a and 1b(Betaseron, Evista, Rebif and Avonex) and Glaterimer Acetate (GA or Copaxone) seem to be equally effective across the Board in preventing relapses andall have a high safety record.
For CIS (Clinically Isolated Syndrome) All of the lower dose interferons seemed to work quite well and only half of those with CIS went on to develop Multiple Sclerosis within 5 years of being treated with these medications. Rebif (the highest dose Interferon) and Copaxone (GA) worked well over a 10 year span of use to prevent relapses and progression in the majority of patients who took them faithfully.
This article also stated that “As many as one quarter of people with MS discontinue therapy within the first 6 months of treatment, with studies showing that perceived lack of efficacy accounts for 30% to 52% of therapy discontinuation.”p6 (citations are in the article in the above web link).
Given the proven effectiveness of the drugs we have had available for the past 15+ years, why are patients so hesitant to stay on therapy? For some, as in the above statement, they feel like it is not helping. Is the Medical community giving patients false hope when prescribing a therapy to treat MS? These therapies are designed to slow the progression of MS by slowing the frequency of relapses thereby preventing some nerve damage over time that could ultimately cause a Person with MS (PWMS) to leave the work force or develop secondary complications that would see an overall deterioration in their health.
So the big question is, how do you choose a therapy that is right for you in your circumstances and with your lifestyle?
I receive a quarterly publication for MS Nurses entitled “Counseling Points” which may be found on the web at www.counselingpoints.com. It is written by MS nurses for MS nurses to assist them in patient communication in the clinical setting of the MS Clinic. The Winter issue for 2011 was entitled , Changing Treatment Paradigms in MS and dealt the fact that as we work with disease modifying therapies (DMTs) over time, one of the findings is that most of our first line therapies (Interferon Beta 1a and 1b(Betaseron, Evista, Rebif and Avonex) and Glaterimer Acetate (GA or Copaxone) seem to be equally effective across the Board in preventing relapses and all have a high safety record.
For CIS (Clinically Isolated Syndrome) All of the lower dose interferons seemed to work quite well and only half of those with CIS went on to develop Multiple Sclerosis within 5 years of being treated with these medications. Rebif (the highest dose Interferon) and Copaxone (GA) worked well over a 10 year span of use to prevent relapses and progression in the majority of patients who took them faithfully.
This article also stated that “As many as one quarter of people with MS discontinue therapy within the first 6 months of treatment, with studies showing that perceived lack of efficacy accounts for 30% to 52% of therapy discontinuation.”p6 (citations are in the article in the above web link).
Given the proven effectiveness of the drugs we have had available for the past 15+ years, why are patients so hesitant to stay on therapy? For some, as in the above statement, they feel like it is not helping. Is the Medical community giving patients false hope when prescribing a therapy to treat MS? These therapies are designed to slow the progression of MS by slowing the frequency of relapses thereby preventing some nerve damage over time that could ultimately cause a Person with MS (PWMS) to leave the work force or develop secondary complications that would see an overall deterioration in their health.
So the big question is, how do you choose a therapy that is right for you in your circumstances and with your lifestyle?
Knowing that over the course of 10-15 years, all of the trusted first line drugs on the market have similar efficacy, you are free to decide on the frequency and route of administration of a medication for you. For many, that means once daily dosing of a medication (GA) in a manner that will not let you forget (same time as brushing teeth or preparing for bed at night or work in the morning). For others, once a week on Friday night after the work week is ended works (Avonex). Some choose an even/odd every other day of the week plan with Evista or Betaseron and others find that a Monday, Wednesday Friday routine works well for them.
Fingolimod (Gilenya) was approved by the FDA a little over a year ago as a daily oral agent and , oddly, people seem to miss more doses of the pill than of daily Copaxone. This can be problematic as Gilenya has an idiosyncrasy of lowering heart rate (sometimes to dangerous levels) on the first dose so the user must be monitored in the Clinical setting for several hours after that dose. More and more clinics are doing this for the same person several times over the course of treatment because the PWMS taking Gilenya will forget to take the medication or go on vacation and not have access to a replacement supply and once off the drug for an average of 10 days, the risk of severe bradycardia (lowered heart rate) is as high as it was with the initial dose.
Another factor which you personally should consider in your lifestyle choice of medication is use of alcohol or other medications that may elevate liver enzymes. Many of the alpha and beta blockers used to treat high blood pressure can elevate liver enzymes. Add this to an interferon or Gilenya which also have the potential to elevate them and even a few glasses of beer or wine in a week can be harmful.
You might ask about the less frequent therapy offered by Tysabri which is given in a monthly infusion. This is NOT a lifestyle choice of therapy as this drug is ONLY to be prescribed for persons whose disease is progressing and for which nothing else has slowed the progression. And it carries with it a risk of severe brain injury or death if the user carries the JC Virus (the FDA approved a new blood test to be used prior to initiation of therapy within the past month).
Novantrone, which is given intravenously once every three months is another medication that is reserved for those for whom nothing else has worked and since it is a chemotherapy, comes with the side effects potentially of nausea, UTI and hair loss. Additionally, a recent finding of leukemia in up to 30% of users 5 years after stopping the drug has made this therapy fall out of favor with many of the prescribing physicians.
Monthly Pulse steroids (generally a gram of IV Solumedrol) have been found to contribute to osteoporosis (bone loss) with resultant fractures. They also change the metabolism so high blood pressure, obesity and diabetes are frequently associated with long term use as is vision loss in the form of cataracts.
Cytoxan is generating renewed interest as an intravenous infusion which is tailored to the individual’s need, severity of disease, schedule and two year dosing with this is showing in many a halt of disease activity. It too, is a chemotherapy and carries a higher than normal risk of infection, hair loss, anemia so is not a therapy to be entered into lightly.
Reproductive goals is another factor to consider. Currently the only drug that has been deemed safe by the FDA for people trying to conceive is Copaxone. Even then, once pregnancy is confirmed, if the person with MS is the pregnant mother, a drug holiday is recommended until after delivery of the child. Males who have MS and are trying to father a child are often advised to stop therapy during the period leading up to conception then resume therapy once pregnancy has been confirmed.
To close, I would like to borrow information from Table 2 in Changing Treatment Paradigms in MS from www.counselingpoints.com
Table 2. Factors to Consider in Selection of Disease –Modifying Therapy
Stage of MS (CIS, RRMS, progressive)
Recent stability of disease course (relapse, changes in MRI lesions)
Patient’s readiness in starting/committing to therapy
Availability of reimbursement for therapy
Previous therapies used and safety/efficacy/adherence
Patient’s comfort level with Mode of Administration
Patient’s commitment to necessary monitoring
Reproductive goals (desire for future pregnancies)
Co-morbid conditions or contraindications
Within the coming 12-18 months we should see another oral medication for RRMS becoming available as well as two more monoclonal antibodies similar to Tysabri for advancing forms of MS.
Written for MS Views and News on February 15, 2012
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Last Updated on Wednesday, 15 February 2012 20:07
Unusual Weather and Your Multiple Sclerosis
By Cherie C. Binns RN BS MSCN - July 2011
The summer of 2011 has shown us many unusual weather patterns throughout not only the United States but many parts of the World. There have been hotter and drier (and far wetter) days than we have seen in decades. For those of us with MS, this can pose problems if we are not careful.
In hot weather, for many of us this means anything over 70 degrees, we need to over hydrate to stay well. Even a quarter of a degree elevation in core (inner body) temperature can cause MS symptoms to worsen (Uthoff’s Sign). This does not mean you are having a relapse. It means you need to cool your body down.
If you normally drink 6-8 glasses of water daily, increase it by a glass or two. You are losing fluid in this heat (as much as a couple of cups a day) through sweat and increased respiration. Iced beverages will cool you more quickly inside than room temperature ones and should be used unless there is a personal reason not to do so.
Remember that many beverages contain caffeine: coffee, tea (includes iced tea and coffee), colas and many other sodas. Caffeine acts as a diuretic and actually causes us to eliminate fluids needed to keep us hydrated and symptom free during hot dry weather so it should be limited. If you feel you need that caffeine, add a glass of water for every beverage containing caffeine. Alcohol also dehydrates in this heat so go easy on the wine coolers.
And don’t forget cooling products. There are many advertised on MS sites and publications but just cooling pulse points with cold water is helpful. If you are able to get in the bathtub, leave it filled with a few inches of water and get in and cool off as needed throughout the day. It can be reused during times of intense heat. Soaking your feet in cool water or even putting a small cool pack (or bag of frozen veggies) under your cap is other ways of cooling if you don’t have a vest. I have purchased inexpensive freezable cool packs from the first aid section of the pharmacy and wrapped frozen ones in a bandana for my neck or wrists at times.
Be creative at staying cool and remember to listen to your body and drink.
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Last Updated on Monday, 21 November 2011 16:21
Regenerative Medicine (Myelin Repair) in MS: Where are we today?
By Cherie C. Binns RN BS MSCN
Several weeks ago, I was asked by Stuart to get some information on the current state of myelin repair therapies as they relate to Multiple Sclerosis. At the time, I was reading a book written by a friend from my college days about his nearly thirty years of study of aging of cells, regeneration of cells and the potential therapeutic effects that would come of developing a technology that would take a single cell, reprogram it and allow it to become nerve tissue or heart muscle. He could see great promise for the cure of many illnesses and, as a result, the prolongation of life with a far greater quality than is currently in existence. The book is The Immortal Cell by Michael D. West, PhD and is available on Amazon for those interested in the process of developing these technologies and making them work.
After my conversation with Stuart, I researched where we were as a society in stem cell therapies and success with treatment. I also searched the database at www.clinicaltrials.gov for “Multiple Sclerosis + stem cells” and was pleased to see a list of 26 clinical trials. However, as I looked closely at each trial, 5 were already closed with no data on the site, 2 were for scleroderma NOT multiple sclerosis, one was for Devic’s, NOT multiple sclerosis, and one was for NMO (neuromyelitis optica) NOT multiple sclerosis. Of the remaining 15 trials listed, one was in Jerusalem, one in Germany, one in Spain, two in China and two in Thailand. Of the 8 trials in the USA, two had not yet started recruiting, three were active and no longer recruiting and only three were currently accepting subjects into the trial.
Criteria for these trials are strict. Persons must have had MS between 5 and 15 years and be between the ages of 18 and 50. They must have tried the injectable medications and been found to have failed them. They cannot have taken Novantrone or Tysabri. They must not have had Cytoxan (or immuran, methotrexate, CellCept) within three months of entering the trial or IV steroids within the month of entering the trial. All trials require that the person be walking when they enter the study.
The proposed approach in these trials is to remove the patient’s own blood cells and process them to target just the stem cells in the blood. Those stem cells would then be modified by electrical charges to redirect the way they grow and work so that they will, when reinfused, go directly to the brain and spinal cord repairing damaged myelin and nerve tissue. These are Phase I trials which means the safety is being established in humans so trial size is very small (10-20 persons). In two of these trials, the patient must undergo complete immune system shut down with chemo therapy and radiation of bone marrow prior to receiving the infusion of their modified stem cells back into their systems. For full information available to the public on what I have described about these trials, follow this link:
Dr. Timothy Vollmer, in his September 2009 issue of eMS news, describes what these open clinical trials seek to do. He writes:
This second type of stem cell transplant is called a hematopoietic stem cell transplantation (HSCT). The blood stem cells that are transferred in an HSCT are typically obtained from bone marrow. In the past, the procedure for obtaining these blood stem cells from the bone marrow was quite grueling and required general anesthesia. Today, however, hematopoietic stem cells are generally collected from the peripheral blood, making the procedure less invasive. (Per Dr. West, “the mortality rate in the bone marrow stem cell patients is commonly about 30%” hence the use of peripheral blood)
In order to perform an HSCT, doctors first collect a patient’s stem cells (from peripheral blood) and then destroy his/her immune system through the use of chemotherapy and radiation. Once that process is complete, the saved blood cells are re-injected and the person’s body begins to rebuild the wiped out blood cells, bone marrow, and consequently the immune system. This process is called engraftment. As mentioned above, the thought behind this procedure is that by destroying and then reconstituting the immune system, it will ‘reset’ and therefore no longer attack itself, thus halting or at least reducing disease progression.
West’s biomedical company GERON worked diligently for 15 years on this technology once it was working in the laboratory to get it to show promise in an animal model but were never successful in making the transition to a human host. Here is what West is currently working on as it relates to MS http://cellcureneurosciences.com/aboutCCN.htm . This link includes a paper on the Animal Model of MS and how it is responding to this new approach to therapy. To quote Dr. West in an email I received from him this morning:
The opportunity:
Because hES cells can become all the cell types in the human body, at least two therapeutic strategies for MS become apparent. First, it may become possible to produce large quantities of the cells that produce myelin and to introduce those cells into the brain to repair the damage done during the course of the disease. Second, it may be possible to generate the blood-forming cells called bone marrow stem cells so that the immune system that attacks the myelin in MS can be removed from the body and replaced with new blood forming cells that do not have that destructive potential. In a third possibility, the day may come when both strategies are used, that is, the immune cells that attack myelin are removed, replace with new blood cells that do not attack the CNS, and then myelin-producing cells are introduced to repair the damage done in the course of the disease.
Where we are at:
The biotechnology company Geron Corporation led in the early isolation of hES cells. In January 2009, the FDA approved Geron’s first clinical trial which utilized hES-derived myelinating cells for the treatment of thoracic spinal cord injury. This trial is currently in Phase I (safety studies) in humans. Bretzner et al (2011) have argued that Geron should consider the merits of testing their product on MS patients instead. Their argument is based on the apparent efficacy of Geron’s myelinating cells in mouse models of MS, and the fact that some pharmaceutical agents targeting myelination while not showing efficacy in spinal cord injury, nevertheless show promise in MS. While Geron is currently not enrolling MS patients in its trials, it appears they may do so in the future, or assuming that their product is eventually approved by the FDA, it may be used at that time off label for MS patients.
The Myelin Repair Foundation (MRF) is in the same boat. They have over 100 strains of cells that look promising and techniques that can change the function of embryonic stem cells and cells from an individual (autologous) which can then be reprogrammed and introduced back into the person. So far they are years away from actualizing this into a treatment for multiple sclerosis. Their progress is highlighted in the brochure at this site:
Many of the researchers working for the MRF are mentioned in West’s book The Immortal Cell, so have been working on this technology already for more than two decades and are still not ready to bring this to a human model.
In summary, while stem cell therapies hold great promise for the treatment of such illnesses or conditions as Multiple Sclerosis, Parkinson’s, Spinal Cord injury, Heart Disease, Diabetes, the technologies have been intensely studied since the mid 1980s without a reliable crossover from the animal model to the human model. There are small studies currently being conducted on humans but these come with potential of severe side effects and potential loss of life.
It is not apparent that a “cure” for MS via this approach or even a reliable repair of myelin in the human host will be available for another 10 years, if even then. The reason for this is that when a treatment has been developed, it must then be subject to rigorous safety and dosing trials then go to the FDA for approval. Many of us have been around to see how long it took to get our first line drugs (the interferons and GA) to market then the resulting battles with Tysabri and Gilenya. Nothing, currently, is closer than that window of 10 years out in the field of stem cell regenerative medicine to treat or cure Multiple Sclerosis.
Respectfully submitted by: Cherie C. Binns RN BS MSCN on July 5, 2011
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Last Updated on Sunday, 20 May 2012 18:32
Why my relapse was not a relapse…
By Cherie C. Binns RN BS MSCN
an MS Patient's story
I have been pretty much off the radar as far as my writing is concerned for several months now. If you read my article “Cytoxan as an MS Therapy” dated July 10, 2010, you will know that I have been on Cytoxan to manage my Multiple Sclerosis (MS) now for nearly two years at this point. Several months ago, I began not “bouncing back” after each infusion as rapidly and I had fewer and fewer good days. Here is what things began to look and feel like.
Tuesday mornings every three weeks, a drive of 6 blocks in our small seaside Historic New England town would have me at our Community Infusion Center. Leah, my nurse, would insert a special needle into the port in my right upper chest below my collarbone (much more comfortable than having blood drawn or starting an IV) and withdraw 10 cc of blood from the artery leading into the right side of my heart (where the tip of the catheter from the port rests). She then sent this off to the adjoining hospital lab for complete blood count, sedimentation rate and every other visit for liver function studies and a basic metabolic panel to assure that my blood values did not indicate a problem that would negate getting the Cytoxan that morning. Once the White cell count was called back to her and was above **2.0 (normal count being between 4.0 and 10.0) she would give me a dose of Zofran over 15 minutes in the IV to combat nausea, wait a half hour with a slow drip of saline running then , over the course of the next half hour, I would receive 1500 mg of Cytoxan through the port.
**[With Cytoxan therapy, white blood cell count is maintained between 2.0 and 3.0 to prevent the body from producing the white blood cells that go into action when a potential infection is present and attack bacteria. In the case of persons with MS, it is thought that if these counts can be kept low, the body will not attack itself creating what we have come to experience as MS relapses]
Three times between February and May of 2011, my WBC (white Blood Cell Count) was below the 2.0 level so the infusion had to be postponed a few days till counts came back up. What my doctors and the infusion nurses did not pick up on (until my symptoms worsened and I brought that to their attention) was that other components of my Complete Blood Count (CBC) were changing as well. This is to be expected because Cytoxan suppresses the bone marrow which produces blood cells. But, I was becoming more anemic with each dose of medication. Instead of having a couple of “low” days after each infusion then a little more than two weeks of good energy and function until the next infusion, I was having a week or two of down time and only a few days of good time between infusions. And I was beset by a round of infections…diverticulitis, a cold, a urinary tract infection, cuts that would not heal, blood sugars elevating, that could not be ignored or fully explained.
At my regular appointment with my PCP (Primary Care Physician) in March, he had my thyroid tested, B12 and Vitamin D levels checked and essentially told me that long term Cytoxan therapy had it’s drawbacks but if I could stick with it for five years, the research showed I had a good chance of “shutting off the mechanism” that caused MS relapses. I might add that my Thyroid and B12 were “less vigorous” than at previous testing but still within normal levels.
Over the following weeks, I began to not recover at all between doses of Cytoxan. I was nauseous, fatigued, achy, experienced ringing in my ears (tinnitus) and dizziness (vertigo) and my blood pressure started to drop and heart rate to increase with even mild exertion. Even with this, I continued to do my 30 to 45 minute exercise routine in the pool every day despite the fact that I had to take rest breaks for the first time in 5 years of doing this. My vision began to deteriorate. Contacts seemed useless and my computer and reading glasses did not sharpen focus as they had when the prescription was changed just a few months prior. Headaches which are not common became a daily presence. My thought processes clouded. I lost words. I lost train of thought in the middle of a sentence. I had to reread a paragraph or email several times to get the meaning of what had been written.
By early June 2011, if I bent over to pick something off the floor there was a good chance I would tip over. My left leg began to lag and toe to catch again for the first time in a couple of years. I was waking at night with spasms not just in my left side (I’ve only had left sided MS symptoms since this all began back in the mid 1970s) but in my right side as well. And I started having a right sided tremor. And Nystagmus (a back and forth rapid eye movement). So, even though I’d seen him for my routine check up in April, I went back to my neuro pretty convinced I was having a relapse. He reran the thyroid tests and did another B12 level and both had dropped significantly in just under three months. PCP and neuro put their heads together and did a battery of blood work focusing on iron, ferritin, folate, B12 , MMA, MCV and other tests that could determine if there were a metabolic process going on or if this was a reaction to the Cytoxan or a true MS relapse. I was started on daily B12 shots for 5 days then weekly for 5 weeks. I might note that another MRI was offered but since the last one showed new brain stem lesions that led us to the Cytoxan therapy and there was very little place to go with treatment beyond that, I declined (the average MRI of the brain now costs $8000 and with no treatment goal if there was a change, it seemed like a waste of resources to me).
And I began to feel better. Each day of the 5 days of B12 had me stronger, more vibrant, clearer mentally, less dizzy, fewer tip overs. Two days after the 5 day course was ended, I woke in the morning feeling awful again with a return of the Nystagmus, tinnitus, vertigo, tremor, nausea and knuckle dragging fatigue. My labs were done again and my bone marrow had recovered sufficiently to have my dose of Cytoxan a week later than usual but both docs decided to wait till I had had a chance to recover more fully. I had B12 (my first weekly dose) 4 days ago and felt better within hours. The next day my husband came home to dinner and commented, “You’re singing, You must be feeling better!” And I was. Yesterday I had the most productive day I can remember having in months and I felt well. Today I have crashed again with the next dose of B12 not due for three more days. Labs done at the peak of when I was feeling so well show that the Cytoxan is “holding” my white count where it is targeted (with 2 weeks now since the dose was due) but I am becoming more anemic. This is common with B12 levels that have dropped.
Why do neurologists check B12 routinely when ruling out MS or following an MS patient? Because even low normal B12 levels can cause neurological symptoms to occur such as tremor, nystagmus, vertigo, tinnitus, neuropathies, vision changes. Correcting those levels over time can diminish or completely relieve those symptoms. An MS relapse is defined as new or worsening of symptoms that last for more than 24 hours and are not relieved by rest or caused by an infection or other medical problem. B12 deficiency is another medical problem. This was not a relapse.
For more reading on the subject, there is a very good 10 page article that discusses the ramifications of low B12, folate and iron levels. It is somewhat technical but its charts and graphs help make it more understandable to those not used to reading this type of literature.
It is:
Laboratory Diagnosis of Vitamin B12
and Folate Deficiency
A Guide for the Primary Care Physician
Christopher F. Snow, MD
ARCH INTERN MED/VOL 159, JUNE 28, 1999
Respectfully submitted to MS Views and News June 22, 2011
Cherie C. Binns, RN BS MSCN
Last Updated on Wednesday, 22 June 2011 10:17
Traveling With Functional Limitations
Information provided by: Cherie C. Binns RN BS MSCN
By: Alina Perez, J.D. and John A. Valentine, Ph.D., Florida Atlantic University Health Administration Program
A week ago we were having dinner with a friend. He was all excited about his travel plans and his decision to take his new electric scooter on the plane with him. Since this would be the first time taking the scooter on the plane, he assumed that the airline would have to accommodate him and his scooter and everything would "fly" soft and smooth. What he did not realize was that air travel for the disabled is not as protected as many people think.
Some airlines have outright stopped disabled travelers from flying, while others have made them follow such requirements as sitting close to the bathroom when their limitations became apparent to the flight crew. In addition to such problems as bathroom facilities that are still not fully accessible to the disabled, other problems can occur with the airlines. Complaints of disabled travelers missing their connecting flights because of inadequate help continue, and complaints of damaged wheelchairs by inappropriate handling remain too frequent.
For individuals who feel that they have been mistreated or discriminated against while traveling on an air carrier because of any functional limitation, some agencies or attorneys specialized in the investigation of discrimination against people with disabilities may be able to offer some help. However, this can be a time consuming and expensive process.
Many people mistakenly think that the Americans with Disabilities Act (ADA) provides the solution to these problems through legal action. While there is a basis for legal recourse in some instances, the ADA does not speak directly to discrimination in the airline industry. Legal protection in the airlines industry comes under the Air Carrier Access Act (ACAA). The ACAA was passed by Congress in 1986 and states that "no air carrier may discriminate against any otherwise qualified handicapped individual by reason of such handicap, in the provision of air transportation."
Yet in spite of this language, the ACAA is not as supportive of disabled travelers pursuing legal action as many people would think. One reason this Act is not as powerful as it might be is because it does not give successful plaintiffs the right to attorneys' fees. Consequently, many attorneys will not take on these cases. In fact, legal action can be so costly and complicated that it may not constitute the best option to remedy the situation. On the other hand, the threat of fines and the fear of bad publicity can be powerful incentives for airlines to find reasonable accommodations for the needs of disabled passengers.
For most people, the best way to assure a successful flight may be to develop a proactive plan to get the services they want in the first place. Some suggestions for doing this are:
Plan ahead. Contact the airlines in advance and let them know what type of services you are going to need. Investigate if the airline has bathroom or other facilities equipped to accommodate passengers with disabilities.
Be reasonable. Get to the airport early. Don't expect the airline to be able to accommodate special requirements if you arrive at the gate shortly before the plane is scheduled to depart.
Be assertive. New staff may be unfamiliar with accommodations that can be made and busy staff sometimes overlook them. But if you did your part and made arrangements with the airline, don't accept anything less than what you were promised.
Be positive. Keep telling yourself and the airline staff that you are confident that they will be able to provide the services you need if they just make a little more effort. Sometimes all we need is reassurance that we can succeed in getting more done than we realize.
A favorite professor once said that the biggest limitations in life are the ones we impose upon ourselves. He may have been right. Of course, we all have limitations that may physically, emotionally, or legally restrict us. But we also have strengths that can overcome those restrictions. With a little bit of thought, planning, and perseverance, those strengths can help many more of us avoid problems when traveling.
Last Updated on Monday, 17 January 2011 13:51
Winter Reminders
Winter Reminders
By Cherie C. Binns RN BS MSCN
As cooler weather approaches, some of us with MS will feel a burden lifted as heat no longer pulls us down. There will be increased energy. We think more clearly and can be more active. If you are one that experiences this change in season in this manner, go for it. Do those projects you’ve been putting off, make those vacation or mini vacation plans, get outside and enjoy the crisp cool air Fall has to offer.
However, it is only a matter of a few weeks before the shortened days, minimal hours of available daylight and even colder temperatures drive many of us inside. For some, this begins a seemingly unending time of darkness, low energy, mood changes, difficulty sleeping and generally feeling less happy with ourselves and our lot in life.
If you are one of these persons affected in this way by the oncoming winter, you may Suffer from SAD or Seasonal Affective Disorder. Many have found relief by installing special lighting in their work areas to dispel some of the gloom. If you do not benefit fully from this simple gesture, there is medical help available. Please discuss this with your Doctor. It is possible that a low dose of medication can stabilize this mood till the sun resumes its high and bright position when Spring approaches. Generally, people with SAD who need medicinal support to deal with the symptoms can come off of the medication once things warm up and brighten up in a few months.
With all of the winter activities available with holidays and parties and craft fairs and concerts that bid us come and make merry, fatigue can be an issue for some. This is the time to plan your activities carefully. If you have a big event in the evening, be sure to get good rest the night before and avoid unnecessary daytime activity that can sap your energy reserves so you can make the most of your Evening out.
I have minimized the energy I spend decorating the house for the upcoming seasonal events and no longer feel it necessary to adorn the whole house, concentrating on the main room where most activities will take place. I used to put candles in every window and now do so only in those visible from the street. This saves electricity and also physical energy in the turning on and off at dark and bedtime daily.
Remember to eat well and exercise a bit each day to keep up your energy. There are LOTS of sweets and simple sugars available this time of year and, while delicious, these can quickly add pounds but also give us bursts of energy that rapidly plummet to knuckle dragging fatigue. A taste or two is fine but limit the sugar intake. Be sure to eat frequently and have a little protein and some complex carbohydrates in each meal (whole fruits and vegetables, whole grains and pastas).
Countless studies have now shown that regular physical activity dispels fatigue so even a 10 or 15 minute workout or walk or yoga/stretching session each day can add enjoyment and clarity and energy to these days of festivity and activity.
May your holidays be filled with joy, your days brightened by the love of and for family and friends and your enjoyment increased by planned time management and sensible intake and activity.
November 18, 2010
Last Updated on Friday, 19 November 2010 18:29
What to know of Gilenya (TM)
What to expect if planning to try Gilenya
By Cherie C. Binns RN BS MSCN
If you have been waiting for one of the new oral medications for MS to be FDA approved, you are likely excited to see that Fingolimod (marketed under the name Gilenya) was approved for patients with relapsing forms of MS on September 21. Many people with MS (PWMS) have been awaiting this news hoping to be able to move away from the injectable medications. The actual medication, however, will not be available for prescription for several more weeks.
Gilenya is a once daily immuno-suppressant medication that works by keeping lymphocytes ( a white blood cell that fights infection and is prominent in MS relapses) in the lymph nodes preventing them from entering the central nervous system and causing inflammation that could lead to new MS plaques and damage. This drug is not without serious side effects, however.
For those who have been on interferons and experienced “flu-like symptoms”, you can anticipate the same with Gilenya and perhaps more serious than that experienced with the injectable medications. This drug also has been found to cause cardiac problems in some patients in the trials as well as vision problems. The first dose is recommended to be given in a medical setting with a period of 6 hour supervision and cardiac monitoring following the dose as cardiac problems generally occurred with that first dose.
Because there were two deaths in the clinical trials from herpes infections, it is recommended that all persons planning to start on this drug have a VZV titer (varicella zoster virus) and if antibodies are absent or low, the person receive the chickenpox vaccine. There will likely be a waiting period of a month or two after this vaccination prior to starting on medication. An EKG is also recommended to rule out cardiac irregularities as well. Gilenya does suppress the immune system so a complete blood count is needed prior to beginning therapy and at least every three months thereafter. Because elevated liver enzymes were common in trial subjects, a liver function test is needed prior to therapy and at least every three months thereafter.
The recommendation is that this drug be used as a second or third line of defense in the treatment of MS meaning that it is not for the person newly diagnosed or those who are doing well on the injectables. It is recommended for people who have continued to relapse on the injectables or those for whom PML is a threat due to long term use of Tysabri. Currently there is not sufficient safety data on long term use to assure that this drug is safe for use over more than a couple of years.
Written July 18, 2010 - By: Cherie C. Binns RN BS MSCN
I have had MS since the early 1970s and was formally diagnosed in 1994. It was not, however, until 2001 when I was no longer able to walk without assistance and was legally blind, that any treatment for the disease was even suggested to me. Since that time, I have been treated with Interferons, steroids, IVIg (Intravenous Immunoglobulin) and Cytoxan. Copaxone was never used because I have allergies to certain dyes and preservatives and it was felt this drug, as entirely synthetic, might not be safe for me to take for that reason. My neurologist will not use Mitoxantrone (Novantrone) or Tysabri.
When a chronic urinary tract infection would not resolve with more than a year of antibiotic therapy, I was removed from my interferon. The thinking was that the interferon was suppressing the immune system so that I could not effectively fight the infection. This decision came about with the consultation of an immunologist working with my neuro and primary care doctor. Within a month of going off Rebif and being placed on IVIg weekly, the urine cultures came back clear and infection has only reoccurred once in the 16 months since then.
In July 2009, I was placed on Cytoxan 1GM IV each week hoping to lower my white blood cell count to between 2.0 and 2.5. Normal levels are between 4.0 and 10.0. In many persons with MS, it has been observed that symptoms tend to be more prevalent and more difficult to manage with higher white blood cell counts. The body seems to “attack” itself more when these “protective” blood cells are at peak levels as if fighting infection.
After several months of adjusting the dose of Cytoxan up and down and shifting frequency of dosing from weekly to monthly, we hit upon a regimen that seems to work for me and keeps my white counts in the 2.0-2.5 range all the time. With that, MS symptoms are more manageable than when I am at higher levels of white blood cell counts. For the past 3 months, I have been on 1500 mg IV every three weeks.
Unlike steroids, Cytoxan does not put a patient at risk for osteoporosis, diabetes, cataracts, obesity or heart disease. The biggest risk is hemorrhagic bladder but predominantly in patients who have had issues with blood in the urine previously which I have not. One of the regular screenings that I must do (every 6 weeks) is a urinalysis to check for blood cells. Also an annual urine Cytology is done to see if there are abnormal cells in the urine which could be indicative of a bladder cancer (a very rare complication).
Cytoxan is a chemotherapy drug used alone or in combination with other drugs to treat certain cancers. It suppresses the immune system so that it does not attack itself and it also suppresses blood cell production so people on Cytoxan long term will likely experience mild anemia and lower than normal platelet (clotting factor) levels. With close monitoring and adjusting the dose and frequency accordingly, these are generally not difficult things to manage and do not significantly impact lifestyle or quality of life.
What have been the benefits of Cytoxan for me?
Freedom from chronic urinary tract infections
Lowered Blood pressure to the point where I can quit BP meds I have been on for years.
Blood sugars within normal range and no need for special diet or medication to keep that normalized.
Heart rhythms have normalized.
I no longer need medication to manage spasticity or pain or fatigue.
Except for a couple days of the month, I generally feel well enough to do most anything I wish to do.
How does Cytoxan dosing feel?
I receive an anti-nausea drug prior to the infusion of Cytoxan so I feel a bit sleepy and listless the day of infusion and sometimes have mild nausea and decreased appetite for a day or two.
My vision blurs for a couple of days after dosing but not enough to be dangerous for driving and not enough to prevent necessary reading or use of the computer.
I actually sleep better for a couple of days after each dose than the rest of the month and sleep is often an issue for me.
What routine screening is needed?
Complete Blood Count with Differential and Platelet count (CBC) the day before each dose. The dose is held or adjusted if the white blood cell count is below 2.0 or above 3.0 but that adjustment has not been needed now for four months as I am so well controlled on this dosing.
Liver function , kidney function and basic metabolic panel every 6-8 weeks along with a urinalysis.
What other precautions should be taken?
Frequent hand washing and use of antiseptic hand cleaners to prevent transfer of infection from environment or others.
Use of a mask when in the presence of someone with the flu or a cold.
Avoid unnecessary contact with pet excrement (my husband now changes and empties the litter box).
I can honestly say, after more than a year on solely this medication for management of my MS, that the side effects are less than those on interferons and it is significantly better tolerated than steroids. Brain stem lesions (responsible for heart rate and blood pressure and blood sugar shifts) are quieted so I need less medication to manage the symptoms prompted by lesions in this area. I have had significant thinning of my hair and use hats and wigs now but it is worth it to have the MS this well controlled. And I have been assured by several neurologists and my internist and hematologist/oncologist that this medication has no known lifetime maximum dosing and I could safely be on it for years.
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Last Updated on Monday, 19 July 2010 17:11
PART II - One Person's Interpretation of: The 24th Annual Consortium of Multiple Sclerosis Centers +Meeting
This is the second in a series of reviews of educational offerings at the CMSC annual meeting in San Antonio June 2010
The 24th Annual Consortium of MultipleSclerosisCenters +Meeting
June 2-5, 2010 at the Grand Hyatt in San Antonio , Texas, USA
As reported by Cherie C. Binns RN BS MSCN
Note: The interpretation of these sessions is one person’s interpretation of the materials presented and opinions expressed and may not represent fully the intended message of the presenters.
For Health Care Professionals who wish a schedule, abstracts and presentation slides of the Meeting’s Offerings, go to http://annualmeeting.mscare.org
Immunosuppression and Immune Surveillance in Multiple Sclerosis
Presented by the North American Center for Continuing Medical Education, LLC (NACCME) and supported by an educational grant from EMD Serono, Inc.
Faculty:
Clyde Markowitz, MD
Director of the MS Center at University of Pennsylvania
Associate Professor of Neurology at the University of Pennsylvania School of Medicine
Philadelphia, Pennsylvania
Douglas R Jeffrey, MD, PhD
Associate Professor Neurology and Director of MS
Wake Forest University School of Medicine
Winston-Salem, North Carolina
This segment looked at immunomodulation and immunosuppression as neuroprotective strategies and also identified current and emerging drug therapies which have proven or potential effect on preservation of tissue in the central nervous system.
Immunomodulators were defined as substances “that alter the immune response by augmenting or reducing the ability of the immune system to produce antibodies or sensitized cells that recognize and react with the antigen that initiated their production.”
Immunosuppression is defined as “The administration of agents that significantly interfere with the ability of the immune system to respond to antigenic stimulation by inhibiting cellular and humoral ability.”
Current Disease Modifying Therapies (DMTs) that are FDA approved for Multiple Sclerosis (MS)
IFN beta 1a (Avonex) weekly IM 6M units
IFN beta 1b (Betaseron ,Evista) every other day SQ 8M units
IFN beta 1a (Rebif) 3x/week SQ 12M units
Glatirimer Acetate (GA or Copaxone) daily SQ 20 mg
Mitoxantrone (Novantrone) IV every three months 12mg/m2 (3 year life time dosing)
Natalizumab (Tysabri) IV monthly
Presumed (MOA) Method of Action of IFN beta meds:
Inhibition of T cells
Inhibition of inflammatory Th1 cytokines
Activation of regulatory T-cells (Th2) and cytokines (IL-4 and IL-10)
Stabilization of the BBB (Blood brain barrier)
Presumed MOA if Glatirimer Acetate
Induction of myelin specific “suppressor cells”
Inhibition of proliferation of inflammatory Cytokine MBO T cell lines
May provide neurotropic support to injured nerve tissue
Benefits to current MS therapies
Reduction in # and severity of relapses
Delay in disease progression by clinical measures
Slow cognitive decline
Reduce enhancing MRI lesions and brain atrophy
Currently patients must have failed IFN beta therapies and GA in order to reasonably be considered to begin therapy with Mitoxantrone or Natalizumab according to FDA guidelines.
***New therapies for potential use in the next 6 months to three years:***
Injectable Daclizamab SQ every 2-4 weeks is a humanized mono-clonal antibody that decreases the proliferation of activated T-Cells and expands natural killer cells (NKC), This drug was approved as an anti-rejection drug in the kidney transplant arena in 1997. Now going into Phase III human trials in MS.
IV Rituximab (Rituxan) is another human mono-clonal antibody that was approved in 1997 for Non-Hodgkin’s Lymphoma and in 2006 for Rheumatoid Arthritis. It has been perceived as fairly safe with no PML history and greater efficacy in the under 50 age group. Not effective in trials for PPMS (Primary Progressive Multiple Sclerosis). Completed Phase III for PPMS and will revisit for RRMS and SPMS patient population.
Alemtuzumab is another IV human monoclonal antibody that reduces circulating T cells and B cells as well as monocytes and natural killer cells. It was approved in 2001 for the treatment of chronic lymphocytic leukemia. It is administered IV over 5 days in the hospital setting then provides immunosuppression for one year. The problem with this drug is that B-Cells begin to recover and reproduce within 3 months whereas T Cells take up to 16 months to normalize. This drug has shown a reduction in enhancing lesions on MRI as well as a slowing of disability in progression on the EDSS scale. Adverse effects include infusion reactions (98%) , thyroid disorders +/- 22%, and infection rates in the range of 66%. Two Phase III trials are currently underway.
Fingolimod (FTY-720) will be reviewed by the FDA on June 10, 2010 and is potentially the first oral therapy to be available. It is dosed by mouth daily and only seems to affect lymphocytes and not other types of white blood cells. Severe asthmatics are excluded from taking this medication and those with chronic herpes outbreaks may not be able to take this as there were two deaths in trials from herpes. Liver enzymes are also expected to elevate and heart rate drops with BP increasing in many subjects.
Cladribine, another oral drug that has two weeks of dosing annually, has completed trials and been submitted to the FDA for approval. It appears this may need further testing with additional markers being assessed as it so deeply immunosuppresses that it takes an average of a year or more for normalization. There has been high infection rates (40-60%) in the study group, 11% of which were herpes infections. Two deaths occurred in the study group…one from cardiac arrest and one from cancer. Some studies are showing an alteration in the immune system for periods of 3-5 years with no remediation.
Laquinomod is a daily oral drug that alters T cell ratios and reduces new lesions by 44% on MRI but so far has shown no impact on the frequency of relapses. Three cancers and some blood dyscrasias have been observed in trial subjects with this drug.
Teriflunomide , another daily oral agent, has shown relapse reduction by 62% in phase II trials. Adverse effects include hair loss, upper respiratory infections and nausea. It is contraindicated in the childbearing population as it has been shown to have tetrogenic effects up to two years after final dose of the drug so has potential for high risk of fetal abnormalities and miscarriage.
Oral Fumeric Esters for daily oral administration have been in use for psoriasis in Germany for several years. In Phase II trials there is an overall reduction in T2 and gad enhancing lesions as well as relapses. Most side effects with this drug are in the GI arena.
The conclusion is that better therapies are on the way but none are without risk. Current approved therapies have a better safety profile than any of the newer drugs currently seeking to come to market. It is voiced that these new drugs will likely end up being 2nd, 3rd or 4th line of defense medications and not used with newly diagnosed patients but only those who have tried and failed meds currently available. No one agent will be affective for all patients so both patients and providers must be flexible when identifying and choosing therapeutic courses.
With the newer drugs questions of what to do when there is clinical failure arise. Once you have tried many of these, there seems to be very little place the clinical team can go from the drug with the exception of Fingolimod which has such a short period of action that it can be stopped, washed out, and another agent tried. All of the new not yet approved agents come with a laundry list of adverse effects such as opportunistic infections, cancers, blood dyscrasias , liver disorders, thyroid disease, that close monitoring is indicated adding to the cost/benefit ration of the therapy.
“Do your Homework!”
There is literature on all of the newer agents
Some have a known track record of adverse events
In this new era of drug therapy , we may see adverse events we have not yet encountered.
Don’t prescribe (or request) a new agent until you have thoroughly done your homework on benefit and risk associated with it.
More updates to be provided in the coming days
Last Updated on Monday, 07 June 2010 15:43
One Person's Interpretation of: The 24th Annual Consortium of Multiple Sclerosis Centers +Meeting
This is the first in a series of renderings of educational offerings at the 24th annual CMSC meeting in San Antonio in June 2010
The 24th Annual Consortium of MultipleSclerosisCenters +Meeting
June 2-5, 2010 at the Grand Hyatt in San Antonio , Texas, USA
As reported by Cherie C. Binns RN BS MSCN
Note:The interpretation of these sessions is one person’s interpretation of the materials presented and opinions expressed and may not represent fully the intended message of the presenters.
For Health Care Professionals who wish a schedule, abstracts and presentation slides of the Meeting’s Offerings, go to http://annualmeeting.mscare.org
Cognition and Neuro-Protection in Early Multiple Sclerosis: Emerging Insights
This is a continuing education offering sponsored by DIME and a grant from Bayer Healthcare Pharmaceuticals
Chair: Maria Pia Amato, MD
Associate Professor of Neurological and Psychiatric Sciences
University of Florence, Italy
Faculty: George H. Kraft, MD, MS
Director, Western Multiple Sclerosis Clinical Center, University of Washington Medical Center
Seattle, Washington
Dawn Langdon, PhD
Neuropsychologist from the University of London, Egham, Surry, United Kingdom
Dr. Kraft “Since MS takes a toll on Neurons , it cannot but help but take a toll on Cognition.” Neuroplasticity is far more prevalent in MS than in Stroke or Traumatic Brain injury (TBI) since events take place over years instead of a matter of seconds or minutes. Therefore the brain has a unique chance to repair itself and develop alternate pathways of information. We do not know if current Disease Modifying Therapies (DMTs) are responsible for neuroprotection and neuroplasticity or if the brain is uniquely engineered to repair itself after an assault.
2009 ECTRIMS conference posters and abstracts suggested that interferons (IFN-b1a/b) and Copaxone (GA) appeared to have a neuroprotective effect since both categories of drug appeared to reduce damage to brain tissue on MRI (Magnetic Resonance Imaging) compared to patients on no medication or placebo.
Not yet released drugs nearing completion of testing also would indicate a neuroprotective benefit. These include Fingolimod, Laquinomod, and BG12.
When it comes to defining neuroprotection, researchers do not agree on a definition or action or outcome which would be either pathogenic or healing.
MRI and EDSS scoring are not effective means to determine neurodegeneration at this point. More potentially useful markers might be brain atrophy, chronic black hole data and MRS (Magnetic Resonance Spectroscopy). Cognitive impairment found through these methods in “Benign MS, Relapsing Remitting MS and Secondary Progressive MS is far more prevalent than we thought even till a year or two ago. We have just not been looking at Atrophy particularly in the thalamus and third ventricle. Both seem to correlate strongly with loss of cognitive function. Third ventricle width and thalamic shrinkage correlate very strongly with cognitive decline especially in patients thought to have Benign MS.
It is Dr. Kraft’s stated opinion that all patients for whom there is not a definitive diagnosis of MS, CIS (Clinically Isolated Syndrome) or a diagnosis of Benign MS (BMS) require basic neuro-cognitive testing to assist in making a diagnosis and rationalizing treatment with DMT’s or cognitive rehabilitation to prevent further decline.
Memory repair drugs used in Alzheimer’s Disease such as Aricept looked very hopeful in restoring cognitive loss with PWMS (patients with MS) but off label prescribing and tracking have shown absolutely not data to suggest that these categories of drugs are beneficial to PWMS. Trials with amphetamines are more promising. Researchers have just not spent the time and energy to look at the role Fatigue (present in 90% of PWMS) in Cognitive Dysfunction except for a couple of very small clinical trials which have told us very little about any correlation. Fatigue may actually play a role in limiting efficacy of cognitive rehabilitation therapies.
Neuroplasticity is the primary reason people can lose massive amounts of brain tissue and still function reasonably well. Contrary to what we used to believe, nerves do repair themselves to a degree and when they are unable to do so, promote alternate pathways for information to travel. To facilitate this repair and rerouting it is important to use it or lose function. Repetitive activities, timed puzzles, problem solving all have been shown effective. Deep sleep is necessary to repair and maintain nerve health and those who are able to get several hours of deep non REM sleep do better than those who sleep sporadically or only achieve REM and not Deep sleep.
Dr. Langdon: Cognitive impairment makes all MS symptoms harder to treat. As a result it is imperative that neuro-psych testing is done as a baseline and also on a regular basis as part of an annual follow-up. Patients tend to be less compliant with plans of care if cognition is altered (40-60% of all cases of PWMS). Cueing and retraining or cognitive rehabilitation techniques improve the over all QoL (Quality of Life) in patients with MS as they are seemingly more able to place and keep in perspective therapies they need to reduce symptoms and remain active in the work force and social environment.
Fatigue and Cognition were the two main factors in terminating employment in PWMS. Along with this finding, it has been shown that once out of the work force, on average, most people with MS have drastically reduced their social Life which has a noted impact of caregivers, children and finances.
Driving ability is one area that has been tested repeatedly and shown to suffer from cognition problems. The loss of ability to multi-task places the driver with MS at greater risk for injury or accident as response time to stimuli is reduced. Add that to visual deficits (present in nearly half of PWMS) and mobility, social life and employment are all impacted.
http://www.stayingsmart.org.ukis a website for PWMS to test for and provide a wide range of rehabilitation techniques in cognitive decline. There is a fast track site here for Health Care Professionals to assist in tailoring programs to the needs of their patients.
In looking at current literature available on the effectiveness of DMTs on preservation of cognition, GA (Copaxone) has not been able to demonstrate any cognitive preservation or improvement although the drug itself is thought to be neruo protective. Betaseron (IFN-b1b) does have a couple of trials that show improvement on cognition. Avonex (IFN b1a) showed significant effect on cognitive repair initially but the study was reviewed and adjusted and ultimately showed no statistical impact. Rebif (IFN b1a) did show improvement in cognitive status in SPMS patients.
DIME, presenter of this educational offering, has a journal club and teleconferences available to those health care professionals who register at www.ejournalclub.org/club.aspx?id=15
They are an accredited provider of pharmacy, nursing and medical continuing education units.
Also, for Health Care professionals DIME has a literature research base at www.ms.ipointofcare.org
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Last Updated on Friday, 19 November 2010 14:49
Dealing with Paroxysmal Symptoms
Dealing with Paroxysmal Symptoms
By Cherie C. Binns RN BS MSCN
For most people with MS, “paroxysmal symptoms” is not a familiar term. However, even for some individuals who have never been diagnosed with MS, these neurological symptoms may send them to a doctor. Paroxysmal symptoms are characterized by sudden onset, brief duration and rapid disappearance. With patients exhibiting these events, brain wave studies do not identify them as seizures. These paroxysms may appear as brief twitching or spasms coming on suddenly and disappearing fully within seconds. They may or may not lead to an MS diagnosis. They are not “MS Seizures”.
I had one patient who developed severe shaking leg spasms for about 20 seconds whenever we tried to reposition him. We were able to minimize this somewhat by letting him know we were about to move him, keeping hands in place for a few seconds before actually moving him, and not stopping if a spasm occurred until he was settled in the new position. This made it easier for him to relax and become comfortable.
Other examples of paroxysmal symptoms are:
the sudden temperature shifts which are well known as “hot flashes,”
a tic in the eyelid or lip,
difficulty swallowing,
problems finding the right word in the midst of a conversation or prepared speech,
sudden emotional shifts that may be inappropriate in the moment but which rapidly normalize,
facial or tooth pain after eating or drinking something very hot or cold,
shooting pains in an arm or leg, hand or foot that do not linger but may be so severe as to almost take your breath away
Some of these symptoms have triggers such as:
fatigue
sudden change in position
sudden temperature changes
some sensory stimulus such as touch
an emotional or physical stimulus
In MS patients, paroxysmal symptoms may signal the onset of a relapse if they appear without warning and last for several days. This is especially true if accompanied by other continuous symptoms such as: fatigue, vision changes, bowel and bladder changes or any of the symptoms that usually indicate a relapse for the individual. If you have not experienced any of these before and suddenly notice twitches or spasms, shooting pains or other events that last only seconds then are gone, this should be brought to the attention of your neurologist.
Treatment for these paroxysms depends on whether or not they interfere significantly with your normal routine and comfort or whether they are minor annoyances that can be taken in stride. Your health care team will want to rule out other than MS causes for the symptoms before prescribing treatment. Things that may be looked at are dental problems with tooth or facial pain or hormonal imbalances with “hot flashes,” or diabetes with foot or hand pain. There are very effective treatments available that can be used for a period of weeks or months to address and control the symptoms and then may be tapered and stopped.
Most of the effective medications for this type of symptom come from the anti-seizure drug group or the tricyclic anti-depressant drugs like Neuronitn, Keppra, Tegretol, Elavil or Deseryl . Many of these effective treatments can be used in far lower doses with fewer side effects, than the therapeutic dose for the condition for which they were initially used. Also, a benefit some people discover when taking them is an improvement in sleep quality. This could be a side effect of the particular medication or the fact that paroxysmal symptoms are not interfering with sleep as they once did. In fact, many people do not realize that they are having these symptoms while asleep until they discover that the quality of sleep improves with treatment.
If you are being treated for paroxysmal symptoms and they have seemingly stopped, it may be time for a talk with your physician about cutting the dose or frequency of therapy to see if they return or if they have quieted to the point where you may come off the medication gradually.
As with any of the symptoms experienced by people with MS, these can be very individualized and you may feel them a bit differently than others do. They could affect your lifestyle or work habits more or less than others with the same condition. For this reason, I have found that most persons who treat these symptoms are quite willing to try treatments that can be tailored to the individual, to give maximum relief with minimal side effects or disruption of routine, while improving the overall quality of life.
Written for MSFOCUS magazine Spring 2010 issue
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Last Updated on Wednesday, 19 May 2010 08:01
Traveling with Scooter or Power Chair
By Cherie C. Binns RN BSA MSCN
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As we are entrenched in winter’s cold, many are thinking of taking a vacation to a warmer climate to break the chill. I have been getting a number of questions on special needs travel and most revolve around scooters and power chairs. For the purpose of this answer to those questions, I will address only those special problems faced by users of full sized power chairs or scooters.
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My scooter has been damaged to the point where it cannot be used on 5 separate flights. The tiller has been broken, seat broken, batteries reconnected to opposite poles causing the batteries to be unchargable, the chassis has been cracked and the scooter has even come rolling down the baggage belt disassembled. The airlines have always footed the bill for the necessary repairs (scooter has been fully rebuilt three times and partially twice).
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Another problem that I have found is that a full sized scooter or electric chair does not fit into the cargo hold of most smaller commuter planes. Since we live near an airport that only has a 7500 foot runway, the megajets cannot stop there so a lot of the smaller and older aircraft are used. I would advise you, if you are traveling with a motorized conveyance to check out cargo capacity. Realize there is no "special place" for your scooter or chair and that it most likely will have luggage packed on and around it. Remove accessories like baskets, mirrors, add on horns. Fold your seat and tiller (if scooter) as tightly as possible into each other. I will also often remove the arm rests and leave them at home since they are particularly prone to damage.
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I check the scooter, make these adjustments, release the drive train so it rolls smoothly, pocket the key (so the battery is not drained in flight or the baggage carriers are not tempted to engage in scooter races) and note on the checked tag any scratches (for the benefit of the airline and potential future claims).
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Unless I have a long layover (more than three hours) I do not gate check it but check it through to final destination. There is less up and down and in and out and banging around involved. I also call ahead and request a wheelchair at all stops and if we are tight on time for a connecting flight, I have the cabin staff call ahead to the connecting flight to be sure they personally come and offload the scooter and place it in the plane then someone is asked (airport transport) to get me to the connecting flight post haste. Since I started doing all these little extras, I have not had significant damage or delays and the scooter is waiting for me at my final destination.
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Additionally, if you are cruising on your break from the cold, know that the average cabin door is only 23 inches wide and most scooters and power chairs are at least 24 inches in width. Book well in advance to request an accessible state room (you will need medical proof now) or consider renting a travel scooter once you reach the ship. Your travel agent can assist in this. Scooters are not available once you board and must be reserved in advance of travel.
The winter of Our Life (How to deal with Seasonal Blues)...
By Cherie C. Binns RN BS MSCN
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Winter is nearly upon us with its shorter days and longer nights, increased activity with holiday and seasonal events, and the added demands on our time with shopping, baking, parties, etc. Many of us, however, do not find this as joyous a time as our friends and neighbors do. We can be beset by fatigue, changes in appetite, a desire to curl up and “hibernate” so to speak. We might be more irritable, sleep less well, or have less control of our emotions. The good news is that this is not something we have to live with every year if we identify why we are feeling this way and take action. It is possible all this is caused by SAD or Seasonal Affective Disorder.
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Seasonal Affective Disorder (SAD) is a real and treatable entity that at first may look to some of us as if our MS is acting up. It saps energy. It wreaks havoc with sleep. It changes appetite. Perceptions of people and places can be altered. Everything may start to ache. We may think we are having a relapse due to the pain, changes in mood, possibly even distortion in vision. In the low light of these late autumn days and early nights and the continuance of this through the next several months, we tend to retreat from life , hole up in our homes or our rooms and not venture out and engage in the more social offerings of this time of the year.
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There are many ways to handle these symptoms depending on the severity. Take advantage of available sunlight and do as much as you can outdoors or in natural light rather than artificial light. Invest in a special mood enhancing lamp to illumine your work or reading area. Invite people to be a regular part of your life or take it upon yourself to contact friends and family by email, phone or for a quiet meal. Ask your doctor whether your Vitamin D levels may need to be supplemented. In more pronounced cases of SAD, an antidepressant can be invaluable in lifting mood and making life more enjoyable. For more information on SAD, check out this link: http://familydoctor.org/online/famdocen/home/common/mentalhealth/depression/267.html
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Many of us experience sensory overload during this season if we allow ourselves to be drawn to every party, religious event, sale, school play, traditional offerings at the theater or movies or any number of things that can crowd our schedules. This is a time of year for selective scheduling.
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Do you bake cookies or make candies or homemade gifts? Look at volume, time spent and recipients. I used to make fudge and home made candies every December. Originally it was for family gifts but eventually began to include neighbors, people at work, my husband’s clients, tenants, people in our place of worship… One year was particularly difficult as far as the severity of my MS symptoms and after making fifty two pounds of fudge and candy in a two day period, cutting, dipping, placing in individual candy papers, boxing and tagging all of this, I sat and cried and hurt all over from the effort of standing or sitting at the stove and stirring or dipping and the extra work of shaping each pound of confection into individual bite sized pieces that were further separated into candy papers or wrappers and boxed and labeled. I looked at how this labor of love had grown out of proportion and decided I needed to make changes.
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Now, only family receives the time and labor of the talents and we no longer spread the “wealth” to all within our social or business circles. You know what? No one seems to miss it and I feel better and less a slave to deadlines and tradition. We draw names for gifts in this family that is increasing in size with married children and grandchildren and in laws and siblings and their spouses and children. We cut the time spent shopping and the money spent on gifts and we focus on the real joy of this dark and quiet time of year….the friendships that sustain us.
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At some point during this season that we are approaching, family and friends gather for a “Yankee Swap”. In this event, all bring a wrapped gift and each gift is numbered. All draw numbers from a basket and take the corresponding numbered gift. Gifts are retrieved in the order of their number. Number 1 then opens their gift and if it is not something that they need or desire, can swap it with any other unopened gift. All are then free to see what their package holds. There are some exchanges amongst guests but generally what has been wrapped is something universally useful and all go home happy. We generally set a price limit on the gifts of $10 -$20 (or in the case of large numbers of persons from a household…$5). If a family of 5 is present and each wishes to participate, this makes it more affordable for all and allows each to enjoy the event. When I was growing up, we did a similar ritual called a “bean auction”. Each guest brought a wrapped item ….generally something recycled like an already read book, a piece of art work, a pair of new socks, an original poem, batteries, etc. Each gift was generally disguised with a brick in the package for added weight, marbles or pebbles that made noise when the package was shaken, used newspaper or packing peanuts or boxes were enlisted to change size and weight of the item being bid upon. We had an “auctioneer” who would offer a wrapped package that could be passed around to determine the “value” of what might be contained therein. Beans (everyone received a little soufflé cup with the same number of dried kidney beans to use as barter) were bid and prizes retrieved. Beans were shared with children who had unwisely bid all on something small. All had fun and the fellowship of the activity lifted spirits and tightened the bonds of friendship of those who shared.
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SAD does not need to eliminate your joy with activities such as this that require very little planning or expense. If you are one of the many persons who suffer from the “winter doldrums” remember:
You could be suffering from a very treatable recognizable disorder (SAD)
You may benefit from more time spent outdoors in natural daylight.
You may benefit from supplementation of Vitamin D….ask your doctor about this.
You can have fun without a lot of time or expense and nurture the friendships that bring joy to your life.
You can say “no” to traditions or events that have become unwieldy or exhaustive to you.
You can minimize decorations and still have a lovely home.
You can take control by making lists of what is important to you to be involved in.
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May this winter bring you joy and peace and health and renewal of friendships and deepening of relationships as you learn to prioritize and care for your needs while giving of yourself to those you love.
You are having what seems to be the umpteenth relapse since
diagnosis and you know by now that treating that relapse with steroids is no
longer working for you. What
alternatives do you have?
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I initially tolerated IVSM (Intravenous Solumedrol) quite
well and it seemed to improve my vision and my ability to walk and empty my
bladder and it helped the knuckle- dragging fatigue I would experience with a
relapse. But after a year on monthly
pulse steroids, I began having more and more trouble with elevated blood
pressure, heart rate, sleep, anxiety, irritability than I thought was
acceptable for the little benefit I could see from the dosing at that
time. My neurologist was very firm that
he felt the monthly pulse was necessary with my Avonex to keep inflammation at
bay enough to prevent more damage than
had already been done and felt that I was on the best treatment at the time
given what was available and proven and the condition of MS as I presented.
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By two years into this therapy, I had had to add a number of
additional medications to manage sleep, blood pressure, fluid retention,
anxiety related to the long term high dose steroid use. I was also 40 pounds heavier than I had been
when steroids were introduced. The
weight added to the fatigue and difficult ambulation and I became more
sedentary which can cause a whole new set of problems for those of us with a
chronic illness. I changed to a
different DMT (Disease Modifying Therapy) which ultimately helped tremendously
, put my foot down and said I would not take any more steroids (even though my
neuro felt that was not the best decision I could have made at the time). A few months later, I had some minor surgery
and the anesthesiologist said that I needed a dose of steroids with the
anesthesia to prevent a relapse since it had been less than a year since my
last dose. He was adamant about that
and could not be dissuaded. That single
small dose spiraled me into several months of metabolic and cardiac problems.
.
So…I am no longer a candidate for steroid use. What happens if and when I relapse and need
to minimize the damage to my central nervous system (CNS) now that this group
of medications is not able to be used? I
found out over the past few month of MS ramping up that there are options
available.
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There are several other immune suppressing drugs that can be
used in lieu of steroids if necessary.
You should have a conversation with your doctor about these and weigh
the pros and cons of each if a drug of this nature is called for to manage a
relapse. Most of these medications have
been on the market for many years and have been deemed to be relatively
safe. Some come to us from the
Transplant Arena (anti-rejection drugs) and some from the Cancer treatment
arena. If you are a person with MS who
has the potential of getting pregnant or getting your partner pregnant, you
need to know before starting these medications, that they have the potential to
harm a fetus and therefore you must be willing to avoid all possibility of
conceiving a child while on these drugs.
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CellCept (Modaphinil) has long been used as an anti-rejection drug following organ
transplant. It has also been approved by
the FDA for treatment of Lupus, RA and Crohn’s Disease and , for years, has
been used by some doctors to treat MS relapses when steroids cannot be
used. It is an oral medication that is
taken once or twice daily but does carry a risk of PML (progressive multifocal
leukopencephalaphy), at a higher rate than that of Tysabri.
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Immuran (azathioprine) , another oral therapy, is commonly used to treat a number of
auto-immune disorders or used as a part of a chemotherapy program in some
cancers. It has potential to cause drug
induced hepatitis if taken over a long period or with other drugs excreted
through the liver. Alcohol should be
avoided while on this medication.
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Cladribine (leustatin)
has been used to treat hairy cell leukemia.
Clinical trials have shown it to have some impact on MS and it is currently
before the FDA for approval as one of the first oral therapies for MS and may
be commercially available in late 2009 or early 2010 for Multiple
Sclerosis. It may still be prescribed
off label to manage symptoms of MS relapse in those who cannot tolerate
Steroids.
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Methotrexate has
been a staple in the treatment of MS for years even before we had the
injectable drugs on the market that we do today. It is not recommended for long term use and
seems to be more effective in SPMS (secondary progressive) than in RRMS.
Cytoxan (cyclophosphamide)
is a potent immunosuppressant which has been used for years to treat SPMS or
PPMS. There have been a number of
studies (many informal) done using this drug on MS patients over the years and
has been found to be moderately helpful.
Howard Weiner at the Brigham in Boston spent years testing this
medication and found it to be effective in about 1/3 of the cases where it was
used (Weiner, H. Curing MS) Since this drug is excreted by the kidneys,
it is important to regularly check kidney and liver function. It also, if used over time, can impact blood
cell production so close laboratory monitoring is needed. It may be given in low oral doses or higher
intravenous dosing. It may also be
combined with steroids.
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All of these medications are discussed in MS for Dummies by Kalb, Holland and Geisser. 2007. Wiley Publishing.
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I have been on a high dose of Cytoxan weekly for several
doses now and it is one of the easiest meds I have taken as far as side effects
are concerned. My vision has improved
as has spasticity, pain and sleep problems.
Energy levels have increased and my emotional incontinence (crying
easily) is less of a problem. I get 1000mg each week intravenously and blood
work is checked before each dose to be sure I have not become too
immunosuppressed. I have lost almost
half my hair with this but am assured it will grow back. My treatment is not to be confused with HyCy http://www.latemstunnel.blogspot.com/
which seeks to wipe out and reboot the immune system. You will find more information on that
treatment on MS Views and News blog, Website, and Facebook.
Last Updated on Wednesday, 09 September 2009 13:28
Treatment Worse than MS?
By Cherie C. Binns RN BS MSCN
Lately, it seems I have been hearing from a number of folks
who read this website as well as on MS Forums and Chat rooms that they have
gone off all therapy for MS because “the treatment is worse than the
disease”.Some are even refusing MRIs to
document whether their illness is stable, progressing or may not even be
present.Most have refused LPs (lumbar
punctures) to confirm that they have MS because of potential dangers associated
with the procedure (pain with the procedure, spinal headache, potential need
for blood patch, etc).
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I started with MS long before we had treatment for the
illness and diagnosis was difficult to pin down because docs did not want to
“pronounce a death sentence” on a young adult when they might live a fairly
normal life if they were oblivious to the illness’ presence. For 19 years, I
had classic relapses and remissions with vision loss, spasticity, numbness and
tingling, incredible fatigue, cognitive and emotional symptoms, and
bladder/bowel symptoms.My caring
doctors wrote this off to stress since I was a mother of two young and active
children and I worked second and third shift so my husband could work days and
one of us always be with the children.So on top of all this, I was sleep deprived and my one stable adult
relationship was compromised by work schedules.
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Finally in 1994 (first episode landed me in the hospital in
1975) when I did not regain the center of my vision after an episode and it was
already 10 weeks into the symptom cluster, I went to my ophthalmologist to find
out why there was a constant cloud in the center of the visual field of my left
eye.He said my vision basically was
unchanged from the previous visit, I was becoming a little far sighted due to
my being over 40 but otherwise, my exam was normal.Frustrated, I decided it was time to get to
the bottom of this and not stop until I had answers.I drew out my left eye and penciled out an
amoeba shaped blob in the center of my visual field through which, I could see
light but no detail.He did visual
field testing and within 5 minutes of the test being completed, came out
shaking his head.He laid my drawing
over the computer generated print out of the usable vision in my left eye and
they were a match.I had not been able
to see the tiny points of light in that area.So, he took a closer look at the back of the left eye and noticed this
time that the optic disc was pale and retracted and the optic nerve pale and
atrophied (shrunken).This can only be
the result of repeated episodes of Optic Neuritis (ON).A full 90% (according to the NMSS and Consortium
of MS Centers) of newly diagnosed persons present with ON as the first major
symptom that leads them to seek a diagnosis.
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The ophthalmologist still seemed puzzled.He had known me personally, socially,
professionally for more than a decade and I seemed like a competent and
energetic person.“What do you think is
going on”, he asked.I replied, “Well,
I’ve had a half dozen episodes of vision loss like this that have lasted
several weeks to several months then seemed to resolve.Along with that, I tend to trip over my toe
and have fallen on several occasions.My left foot goes numb when I am on stage singing and I’ve had to be
sure there is a stool present to sit on so I can safely make it off the
stage.I have trouble emptying my
bladder.When I get on the phone with
physician’s offices at the end of the day after seeing patients (I was working
as a Home Care Nurse) I often cannot find words to describe what is going on
with the patient and what I feel needs to be ordered or changed for treatment
even though the notes are right in front of me.I cannot think or move when it is very hot.I think I may have….MS.”I will not print his response!
.
To his credit, he ordered an MRI of the brain with and
without contrast (fairly new technology at that time) and made an appointment
for me at a major MS center a few hours from where we live.On December 8, 1994, the mystery symptoms came
to light with the diagnosis of MS.Looking back at an old CT scan from 1987, they could see scaring where
lesions now appeared.But there was only
one treatment for MS available….Betaseron….and there was a lottery for its use
and it was being given to only the most seriously impaired persons at that
time.
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By 1996, a new neurologist took over my care.He was “99.9% sure” I had MS but at that
time there was only an extensive history and MRI to go on.He ordered Evoked potentials, EMG, LP, read
them himself and pronounced that I did not have MS but a psychological disorder
and refused to put me on medication (which by now was readily available).Meanwhile, I was falling more, was using a
cane, had lost my job.
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1998, I was back at the MS center where I was diagnosed for
another opinion.Using 2 canes now,
having trouble seeing well enough to drive at night or in the rain, self catheterizing
intermittently when my bladder would not empty.Two more lesions on the MRI.I saw a resident at that visit.He spent nearly 20 minutes with his back to
me reading my chart and asking questions.“What makes you think you have MS?”“Are you suicidal?I see you’re
on Zoloft?”He then proceeded to do such
a brief, rapid neuro exam he could not have seen deficits if they were
screaming at him.And he pronounced me
in the wrong clinic and offered a referral to psych.Mad?Doesn’t even begin to describe my feeling at that moment.I insisted he get the MD who had diagnosed
me.When he came in the room, I asked
him if there was some reason I was seeing a resident today instead of himself.
I have forgotten his reply.I asked him
if he’d ever watched this resident do a neuro exam.He said he had not.So I asked him to watch and instructed the
resident to do the exam again.This
time, with mentor watching, he took a couple of minutes rather than 30
seconds.I commended him for spending a
bit more time then proceeded to tell him what he had missed in the exam and why
certain parts of his exam needed to be modified to pick up deficits.The attending agreed and the resident was
dismissed.Yes, I still had MS but
looked good and did not need meds (there were now three on the market).He never watched me walk with the two canes
or struggle to stand unassisted and I went home in tears.
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By 2001, I was legally blind and not able to drive anymore
and was using a scooter full time outside the house and canes and wall surfing
indoors and had become isolated.I
could no longer attend evening rehearsals of a chamber choral group I had
helped to found years earlier.I was
cutting back on my music ministry role at church because I could no longer see
music to lead the congregation and had to memorize everythingand Thursday evening rehearsals were often
too fatiguing.I was not able to work
because cognitive issues had taken root and the memory and data access
necessary for nursing and consulting had been compromised by the MS.I found a new neurologist who offered me the
first treatment in the 7 years since diagnosis (26 years now with MS documented
symptom clusters of relapses and remissions).He put me on 5 days of high dose IV steroids and a week later discovered
that the neurological exam was less “off” and mentally I was “sharper”.So he told me he was putting me on Avonex, a
weekly interferon that would work with the steroids monthly to keep the disease
from progressing further.That helped
for a while then the steroids began to wreak havoc with my cardiovascular
system.I had been researching other therapies and
asked to go on Rebif (4.5x the weekly dose of Avonex in three divided
injections) and off the steroids.My
neuro said “You won’t like it.There
are too many side effects.I personally
have never prescribed it because of that.”
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How does one counter that?I asked him if the side effects of the medicine were worse than the side
effects of the MS?He asked what I
meant.I said, “I can’t see well enough
to drive any more and can only get around outside the house in a scooter so
must find someone to drive my car which can carry the scooter.They must then help me load and unload it
which has limited the pool of people available to help.I have to catheterize to empty my
bladder.I wake no less than three times
an hour due to pain from spasticity at night and the meds have side effects
that are difficult to take.I cry at the
drop of a hat and the Zoloft does not help and I have put on 30 pounds from the
meds.”He admitted he had never thought
of it that way and agreed to try the Rebif.Three months later, I walked into his office without canes or scooter
and he did not recognize me.
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That self advocacy put me on track to change life style
habits, diet, exercise, get off most of my other meds over time and under the
direction of my PCP (Primary Care Physician), and, although I had to deal with
injection site reactions with the Rebif and occasional flu-like symptoms, I
felt I had taken control of my life back.
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I can honestly say none of the tests (MRI, Evoked
potentials, EMG …4” needles repeatedly inserted into the muscles of the arms
and legs and electricity applied to test muscle response, LP), were worse than
the debilitation and pain I had experienced with MS.I can honestly say none of the meds I have
taken to manage the disease have been worse than the disease itself.Some of the symptom management meds had side
effects that were hard to take but by controlling exercise and diet, I no
longer needed meds for spasticity, nerve pain, depression and those side
effects were eliminated.
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I know this is a personal decision …. Whether to take meds
to slow the progress of the MS… but my personal opinion is that newly diagnosed
persons are not equipped to make that decision because they have not had the
chance to see what untreated MS has to offer at its worst.They might get a course of steroids to knock
down a relapse and feel that they’ve “beat this thing” again and still don’t
need to take shots.
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Many of the people I’ve spoken to recently (some who read my
writing on Stu’s Views and email me with questions) are not on meds because of
the “side effects”.Like me, they were
told by their docs that they would not like the side effects and they believed
the doctor and opted not to treat their illness (unlike me).Some are scared of needles so won’t have the
LP, EMG or other tests done to determine the extent of involvement of the
disease process.Many report
claustrophobia and avoid the MRI like the plague.I admit I used to have to take valium before
“shooting the tube” but have learned to meditate while in there now and can do
it without premedication.Some, like
myself, have pain while on that hard surface unable to move for an hour or
more.That pain is not permanent and
gets better once you are up and moving.
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I think the 26 years of having MS before being treated were
a gift in hindsight.I learned how bad
MS can be.I learned how it can limit
my life.I learned how it can change the
way I see myself.And I learned that I
can control a lot of that.I can
control my diet.I can control my
exercise plan.I can control what I take
to prevent the MS from doing worse than it has already done.I can choose to communicate with others
rather than stay in a shell at home and let blue moods rule the day.I can do things that I find joy in and be
active to a degree with my grandchildren and husband.I can kayak, swim, cruise, enjoy a car trip
(as long as we stop every couple of hours for stretching and bathroom breaks),
I can take a cruise and see worlds I’ve not seen before, I can serve the
community through church or Rotary or Habitat for Humanity.MS is something I have learned does not have
to dictate limitations on my live and my loves.
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There is no sanctioned
treatment out there that is worse than MS itself.And there are not tests needed to prove the
MS that cannot be borne with dignity and help to prove that I am (you are) not
crazy and I am (you are) valuable and I (you) can be an asset.
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So please, if you are reading this and have MS and are not
on some form of treatment to slow the progress of the disease, or are not
getting recommended tests to firmly diagnose the MS or track it’s progress,
rethink that decision.The MS
Association of America has a program to help uninsured or underinsured persons
get an MRI to track the effectiveness of your therapy or the fact that you are
stable on therapy or unstable without therapy.Do not let “ignorance be bliss” for you.Learn about your enemy and take what you
learn to fight what MS may send your way and take charge of your life.
Written for “MS Views and
News” on August 16, 2009
By: Cherie C. Binns RN BS
MSCN
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MY Personal thanks to Cherie for writing this article.
Best Wishes, Stuart Schlossman
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Last Updated on Wednesday, 19 August 2009 07:20
Relaxing and Vacationing with MS
By Cherie C. Binns RN BS MSCN
Summer 2009
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We are in the midst of summer with all of the fun and
challenging opportunities available to us only at this time of year.Although this has been an unusual summer for many of us due to weather
pattern shifts, there are still many things you can do alone or with family that
are relaxing and fun.
.
There are some very important points to keep in mind if you
are a person with MS or just if you love a person with MS.
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1.Stay well hydrated. Even mild changes in
your schedule that create a little (or different types) of energy expenditure
can cause mild to moderate dehydration as the temperatures increase. Get
plenty of water and non-caffeinated, non-alcoholic fluid intake to prevent
fatigue and confusion or cognitive changes.If you are one of those
persons whose ability to perspire is impacted by MS this is especially
important.
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2. Remember to protect yourself from harmful UV rays by
using a UVA and UVB sun block of spf 15 or higher. For some of us with very
fair skin you might want to consider an spf of 45 or higher. These products
are becoming better each year. If your sunscreen has been on the shelf for the
last couple or three years or longer, it is time for a new bottle as , just like
medication potency, your sunscreen may lose some of its effectiveness as it
ages.
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3. If you plan to travel, plan ahead. Booking air and
travel packages early will often save you considerable money that can be later
used for a special meal or souvenirs . If traveling by road, look into the
services offered by companies such as AAA that will target hotels with pools,
A/C, and will also tip you off as to where there is ongoing construction and
offer a way around it to save time, gasoline and frustration.
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4. Heat can provide many of us with difficulty
functioning as it gets warmer and you may need to consider getting some help
managing your body's response to the heat and avail your self of one of the many
cooling devices or programs out there for people with MS. www.msaa.com or
www.msfacts.org both have programs where
you may receive cooling products at no charge to you if you qualify. I never
thought I could qualify but I did so apply. Some companies, like www.heatreliefdepot.com has
hundreds of different types of cooling products for sale at a very reasonable
cost. At check out, if you enter a note in the comment section prior to your
order being submitted that you have MS, they will give you 10% off your entire
order. AND if you get a product that you find helpful and write a review on it
for them, you get an additional 15% off your next order.Additionally, there are many sponsors on this site that offer cooling
products.Please let them know you read about them here so they
know their target market is seeing their ads.
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Be well, travel safely, don't overdo in the garden, keep your
cool, and have a wonderful summer..
In the fall of 2006, when I first began “Rehab My Way” I could not have imagined how well it would work for me nor could I have fathomed the interest other people with Multiple Sclerosis (MS) or mobility problems would have in what I was doing.As a result of severe osteoporosis in my feet (several non-healed fractures over the period of a year) I was advised that my walking days were over and a motorized chair was recommended by several physicians and physical therapists as a lifestyle change.Water exercise, I was told, would allow me to keep joints active and mobile without stressing the fractures more and might also relieve some of the joint pain I was experiencing from inactivity.
After trying out the public pools that were available in our area, it rapidly became clear that the exhaustion factor and inaccessibility of wet pool decking to someone in a chair or on crutches made them not only unsafe, but impractical for my needs.So we looked for alternatives.Thank goodness the Economic downturn (recession?) had not begun to radically impact our lives at that point and we had more choices to meet this need than we have in today’s economy.We shopped the Internet for various forms of pools or water therapy areas that we might add in the yard or on a deck or porch or in a small addition to the house.Because I have never enjoyed swimming and I literally broke bones doing a flutter kick with my left foot, something like a lap pool or endless pool where one swims against the current did not seem to be the right solution.
I was already doing a number of stretches from the National Multiple Sclerosis Society’s Stretching with MS and Stretching with a Partner with MS (available at no charge to those with MS who call their local chapter or 1-800 FIGHT MS and request them).But the fatigue and heat sensitivity factors were so great, I could not work for more than 5 minutes without Uthoff’s Symptoms developing.This is a condition where overheating can make symptoms of MS worsen or reemerge if they are not currently active.So, I faithfully did my 4-5 minutes of stretching and exercise 4 times each day and pretty much kept off my left foot.
We found a 7 foot diameter Jacuzzi at a local pool show for about half the retail cost and also purchased Versarails TM, a movable position support bar, and built a deck off the downstairs bathroom to set this into.As we got going on this, the project grew.I know that cold is just as detrimental as heat to many of us with MS (myself included) so could not see me going out onto the deck in the rain or snow to get in the water and exercise.As a result, walls and a roof were added and a door connecting the bathroom to the therapy room was installed.
I began by getting in the still water three times a week for about 10 minutes each time and doing my stretches with the aid of the Versarail TM for support and balance.Sitting on the benches of the Jacuzzi gave me the stability I needed to get some of the muscles stretched that I could not get on the floor.I gradually added some strengthening exercises to the stretches with the aid of Pilates Tubing (You can obtain this from gyms, Stores like Sears or TJ MAXX or your physical therapist).As the moves became easier, I shortened the tubing allowing for more force to be exerted on the targeted muscles.Within months my routine had expanded to 30 minutes 5 times weekly and I had begun walking unsupported and pain free.Please remember as you read the routine that follows, that this routine has evolved over two and a half years.You must start slowly and progress slowly in order to get to the point I describe below.
Someone recently asked me for that link to see what my routine was and I became aware that what I do now has little resemblance to what was written fourteen months ago in the last edit of that article.Today, I focus on stretching, strengthening and cardiovascular workout.This routine lasts between 45 and 50 minutes 7 days a week and looks a bit like this:
50-100 pull-ups using the Versarails TM
Still supported by Versarail, I twist from side to side bringing top leg straight in front of me with toe flexed to stretch the muscles down the entire back of the leg.At the same time the bottom leg is kicked back behind me to stretch the muscles down the top of the thigh.I’m not into a full split yet but suspect with more work that can be achieved.
Sitting on a bench under water, cross legs with outside of ankle resting on opposite knee. Push down on top knee so inside of thigh is stretched.While holding this stretch, lift foot on the floor as high as you can to stretch the muscles of the buttock of the top leg.Hold for 20 seconds then switch legs.You may need rails for support while doing this.
Sitting on bench sideways with legs straight in front of you, place foot of outside leg in handle (stirrup) of Pilates band and shorten band through rail to the length desired to give appropriate tension to the next move.Keeping pelvis straight and tummy in (no arch in back), move the outer leg as far out to the side as you are able, hold a few seconds and bring it back to center. This works the muscles of the inner thigh and back of the leg.I now alternate this move with a downward move to the floor of the pool and an upward move where foot is out of the pool so I work the hip in three different directions while in that position.Currently I am doing 40-50 reps of this on each leg but started out with 5.
While in this same position, shorten Pilates tubing to about 12 inches and place the inside foot in the stirrup.Outside leg now has the foot resting on the floor of the pool while the leg closest to pool wall is brought across center line of body stretching the muscles on the outer thigh.You may vary this move by moving leg out with toe up, heel out or toe out.You will feel which muscles are being worked with each position change.
Move body 90 degrees on bench so that outside leg is now against another wall of the pool and repeat the above two sets of exercises from the new angle.
With Pilates tubing over Versarail TM in front of you, grab handles in both hands and pull forward and down as far as you can reach while keeping back completely straight.Next, move forward and out to the sides as far as you can stretch.Try moving hand position so your palms face down, up sideways to work the muscles on all sides of the arm.Be careful not to extend arms behind your back while doing this as some discomfort between shoulder blades can result.
Stand using a higher seat or the edge of the pool for support and place one foot behind you, foot flat on the floor, and lean forward keeping your back straight.This stretches the muscles down the back of the leg (calves and hamstrings).Switch legs and repeat.
Grab an ankle behind you and pull upward on the leg to stretch the muscles on the front of your upper leg (quads).The higher you pull your ankle, the greater the stretch of muscle.Please be careful not to arch your back but keep it straight while doing this.Switch and repeat with the other leg.
Kneel or stand in center of pool (depending on depth of water) and reach a hand fully extended into the air.Slowly bring the straight arm over your head and hold till you feel stretch down your side.Repeat with other arm.Then change angle so you are reaching forward at a 45 degree angle with each arm and backward in a 130-140 degree angle with each arm.This last move should be avoided if you have damage to lower back or experience discomfort with the move.You will easily be able to tell that the muscles of your torso and upper abdomen are getting a workout with these moves.
Finally, I sit on the seat and do several minutes of just kicking with toes pointed up, down and relaxed.This adds an element of aerobics to the strength training and stretching.
Remember to keep your moves fluid.Breathe throughout the exercise.Drink 8 ounces of water for every 10 minutes of exercise in the hour following your workout so you flush your system of toxins released during the muscle work.You will have less soreness and greater ease of movement if you are faithful to rehydrating.And remember…easy does it.You will not get to this point overnight.It has taken me more than two years to be able to do some of these moves.Reread “Rehab My Way” for recommendations on some of the earlier and easier moves.
People frequently ask me about water temperature.This can be a very individual question.Personally, I have problems with spasticity if the water is cooler than about 80 degrees.In the winter when the room temperature is cooler (60 degrees) I keep the temperature of the water between 88 and 90 degrees.In the summer when the air temp might be 85 or 90, I keep the water set at the lowest temp (80-85).If you have control of the temperatures, find what feels best and tires you least.Remember, I can exercise on the floor for just a few minutes without Uthoff’s developing but I can work in the water for 45-60 minutes with no resumption of MS symptoms.
With the combination of daily exercise, Calcium, Vitamin D and medication to halt osteoporosis, I have seen a 4.9% increase in bone density over this past year on my scan done in February 2009 over the one done in February 2008.
So….know yourself.Find what works for you.Look for facilities, place and plan that you can stick to and get on with Rehab or Exercise your way.Check with your doctor or physical therapist before embarking on any new exercise program.Oh…finding the right music to keep me going or help me count has been a real boon to extending the workout.It is a lot easier to do aerobic work with a beat well past the point where you might have stopped in a quieter environment.It has worked for me and it can work for you!
Cherie C. Binns RN BS MSCN
March 27, 2009
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Last Updated on Wednesday, 19 August 2009 07:23
Oh, My achin’….! Could this be Spasticity?
By Cherie C. Binns, RN BS MSCN3/1/09
Those of us who have played sports, worked out rigorously, are parents of young children or grandchildren have suffered a major injury or accident….know what pain is.And that pain often comes back to haunt us at the most inconvenient times.We are caught in the act of lifting something out of the trunk of a car or picking up a child, or taking something off a high shelf, or trying to get a good night’s sleep only to have pain keep us awake and aware.
For years (with a history of a couple of automobile accidents, injuries while working on the family farm, a broken tailbone, a torn ACL in my left knee) I suffered short and long term bouts of discomfort and out right pain that at times, interfered with my level of activity or my quality of sleep.For years my docs listened to the history and threw mild muscle relaxants and Ibuprofen or mild narcotic pain meds my way to alleviate this.For years they said something to the effect of, “Well, you know….now that you have MS, all these old injuries will come back to haunt you.The body has a long term memory.”And for years I accepted that rationale.
On October 21, 1993, my family was in my 1992 Buick Century sitting in traffic at a stop light when a 1987 Nissan Stanza plowed into the rear of our car doing an estimated 50 miles per hour.I was driving with the tilt steering wheel positioned low in my lap and my left foot flat on the floor in front of the seat and the knee of that leg touching the rim of the steering wheel.David was in the passenger’s front bucket seat.Heather was sitting behind David on the passenger side of the back seat and Becky behind me.All of us were buckled with lap and shoulder restraints.Heather had her left arm resting on the back window ledge and was looking at traffic following us as she screamed, “Oh, My God!They’re going to hit us!”A split second later the traffic ahead of us started to move and we were slammed from behind and pushed some 50+ feet down the road even though my right foot was firmly on the brake.The back seat of my car was pushed forward over a foot towards the front giving Becky just inches of foot room, the full trunk was compressed into where the back seat was, the Front passenger seat was snapped so that it flopped backward into Heather’s lap then back upright and came to rest turned partially toward me, the driver.And the combination of the shoulder and lap belt and the steering wheel tilted down, held me in place while my body was forcefully flung sideways and my ribs on the left side of my sternum were torn from their position and the muscles holding my hip in place against my sacrum (lower back of the pelvis) were torn .I was later told that these injuries masked a severe whiplash that ultimately created left arm pain and weakness.
We were essentially fine given the seriousness of damage to the car.Heather had neck pain and broke her ankle tripping over something that evening because she could not see where she was going due to the neck brace.Becky and David were barely stiff.But I was left with constant hip, lower back and left leg pain as well as increasingly severe left arm pain and weakness.Those in the car that hit us did not fare so well.Both were wearing seatbelts and shoulder harnesses and both broke the windshield with their faces.Both had the dash and engine push into the passenger compartment and pin their legs.This was a forceful crash!Yet, the insurance company expected us all to be fully recovered from our “soft tissue” injuries in 6-8 weeks and stopped paying for Chiropractor, orthopedist and Physical therapy at that time.Yet the pain dragged on and the nights became long and the days interminably longer and difficult because of poor sleep due to pain.
Let’s jump ahead 8 years now.I’ve had a diagnosis of MS since a couple of months after the accident.My hip, lower back and left arm pain have been attributed to MS neuropathies and Neurontin, and Oxycontin are not touching the pain nor helping the quality of my sleep.I finally convinced my doc to order an MRI of the neck when I was in the machine anyway for my annual brain MRI.It showed that the vertebra in my neck were crumbling and discs missing or bulging and the nerves running from my neck to my arm were badly pinched.Believe it or not, this was the first look at what the accident had done to my neck and insurance had settled years earlier.The left arm pain and weakness “from the MS” disappeared completely and instantly when the pressure was taken off the spinal cord and exiting nerves to the arm during a fusion of my neck in 2001.Pain was written off to MS with no tests to rule that out and I had a fixable problem!Do not assume that your pain is caused by your MS.Make your health care team prove to you that it is.
The hip and lower back were another matter.The MRI of the hip and pelvis showed continued inflammation in the muscles of the left buttock and thigh but not nerve involvement other than sciatica due to impingement of the sciatic nerve in the SI (sacro-iliac) joint.PT began and the pain worsened and the sleep came less and walking could only take place with the aid of a cane.Finally, I changed physical therapists and this new therapist had a father who had MS and after a few assessment moves, said she thought my back, hip and leg pain was a result of spasticity from the MS.She set about trying to calm the inflammation causing the pain through Ultrasound, electrical stimulation and infrared light treatments and had me doing stretching exercises rather than strengthening ones I had been doing.And there was some relief.And sleep came easier.And I did not have to put so much effort into walking.
Now that spasticity had been identified, my neurologist, on the next visit assessed the severity of it, listened to what I was doing for comfort measures and suggested a couple of things.He wanted me using the NMSS stretching routines (they are free if you call your local chapter in two books entitled “Stretching with MS”and “Stretching with a Partner with MS”) and he suggested that there are many medications out there that can relieve spasticity caused by MS.He explained that “Central Spasticity” is caused from brain and nerve involvement and needed a whole different approach to management than muscle stiffness from an accident or injury which is more peripheral in origin.So…the Flexaril and Soma, and Robaxin I’d been given were not appropriate meds for the treatment of MS spasticity which comes from the Central Nervous System (CNS) and not a more localized surface stimulus.He offered Baclofen (taken three times a day to keep blood levels at peak for severe or chronic spasticity), Zanaflex which can be taken up to every 6 or 8 hours as needed and may be taken with adjustable dosing depending on the times of day the pain and tightness are worst, and Valium which can help the discomfort of milder forms of spasticity.Because I was convinced I could manage the spasticity with exercise, now that I knew the cause of the pain, I chose to work with Valium for mild tightness and discomfort or Zanaflex for more moderate problems since I did not want one more med on board that I would have to take every day even if I was feeling better.That was my personal decision and yours might be different.
How does MS spasticity differ from muscle pain from an injury?Muscle pain from an injury is caused by tearing or trauma or bleeding within the muscle and responds well to rest, ice, and eventually heat as well as over the counter pain relievers and , in some cases,muscle relaxants.Spasticity from MS tends to worsen with application of cold, generally worsens with rest and improves with stretching and activity, and may need central nervous system altering medications to stop the impulse for tightening of the muscle from making it to its target (butt, leg, arm, etc).
Spasticity from a central nervous system source has two possible manifestations:tonic movement and clonic movement. Tonic movements are tight, rigid, slow, and can be painful.Clonic movements are “clawing” jerky, trembling and can use a lot of energy and calories.Those of us experiencing Tonic Spasticity are the ones that have trouble walking because of stiffness in a leg or hip.Those with clonic spasticity may have whole body shakes while attempting to change position or something as minor as a facial tic that will not settle down.Baclofen is generally recommended for the clonic type of spasticity and a baclofen pump for severe ramifications of that (more on that in a minute).Zanaflex or Valium, until recently, have been the mainstays for medicinal management of tonic spasticity.
The Baclofen Pump has been a helpful treatment for many who suffer from severe clonic spasticity, especially affecting the body from mid chest or waist down.A small catheter or tube is carefully inserted into the area around the spinal cord and delivers a tiny amount of medicine continuously into that area to quiet the nerve impulses.This medication administration is accomplished by the implantation of a hockey puck sized pump inserted under the skin of the abdomen in much the same way a cardiac pacemaker is inserted under the skin of the chest.It is refilled in the Dr.’s office every 2-3 months through an injection port in the pump.Persons using the Baclofen pump do not report experiencing the dry mouth and sleepiness those taking the oral form of the medicine have because the dose is a tiny fraction of what has to be taken by mouth to manage the tremor or spasms. Persons with a Baclofen pump who have been wheelchair bound for years will often find that with some help and work, they can once again walk and independence increases.Fatigue minimizes as the energy needed to support the shaking spastic movements is subdued and rest improves.Persons with urine or stool incontinence may find they have more control with the help of the medication being delivered around the spinal cord.
Another promising treatment that is ready to go to the FDA (as we read last week in this blog) is Fampridine-SR.Originally marketed as a drug for fatigue, patients reported not so much improvement in fatigue but an improvement in the energy and time spent trying to walk and get around.As a benefit of that, some said their fatigue was lessened.
Each of these drugs has potential side effects and problems associated with them.It is important that if you think you are experiencing spasticity in any form, you talk to your Dr and have a Physical therapy evaluation to determine if this is the problem and not something else like the injury I described at the beginning of this article.And it is important that you stretch and move and loosen the spasticity to whatever degree you are able.But it is most important that you keep lines of communication with your health care team open and let them know if what they are recommending is helping or hurting your overall quality of life. With this particular MS symptom, there are so many approaches, that you should be able to find one that works for your particular manifestations of the problem.
Multiple Sclerosis (MS) is a chronic neurological disorder that affects the central nervous system, (CNS) comprised of the brain and spinal cord. In the CNS, nerve fibers or axons are surrounded by a layer of insulation called myelin. Myelin allows nerve signals to travel properly. CLICK, to Continue Reading
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