Ask the Doctor
By Dr. Jack Burks
Q: I have heard of an MS treatment used in Europe that is having amazing results and I know there are a few physicians in this country who are using this non-FDA-approved treatment. It involves amino acid injections. Do you have any information on this treatment and how I might locate a physician using it?
Also, in addition to MS, I have been diagnosed with fibromyalgia and it seems that whatever helps the MS (i.e., cooling vest) exacerbates the fibromyalgia, which responds well to a heating pad. Can you give any suggestions as to how to balance the two conditions?
A: Your first question on amino acid injections for MS is not specific, and the names of the amino acids are needed before I can comment. Peptides and amino acids are the building blocks of proteins. Vast numbers of amino acids are used to treat a variety of medical conditions. For example, all four of the current first-line MS therapies involve peptides, amino acids, and/or proteins.
Your second question is difficult because every patient responds uniquely. The positive effects of cooling to help MS, and heat to help your fibromyalgia, need to be balanced with their negative effects for each condition. Individual patient responses vary with these different types of therapies. Trial and error may be the best solution. A physical therapist may serve as a good "coach" for you, and may offer additional strategies to help reduce your symptoms. Additionally, Lyrica ®(pregabalin) has been approved by the United States' Food and Drug Administration (FDA) for treating pain associated with fibromyalgia. This might be another option to discuss with your doctor.
Q: I've been taking Copaxone for my MS. My neurologist says I don't have any new lesions. I'm 51 and I also have epilepsy, fibromyalgia, rosacea, arthritis, and I've had extensive orthopedic work done, including implanted rods and screws. I take lots of medicine and see lots of doctors, but I don't have answers for the following question. For years, both of my legs feel like they are full of bees, and they vibrate and shake - sometimes so hard, I get sick to my stomach. No one sees the moving because it is happening on the inside. Now the shaking has also moved to my arms and hands. It 's very difficult to deal with. Please, can you tell me what it is, and how to stop it?
A: Your symptoms must be very distressing. While it is most likely related to your MS, some epilepsy patients have similar intermittent symptoms. In MS, damage to the specific areas of the spinal cord and brain pathways which control sensation, can cause these symptoms.
The treatment of these types of MS symptoms usually begins with anti-seizure medications. Are you already taking epilepsy medication? Examples of medications used to treat such MS symptoms include Neurontin ® (gabapentin), Tegretol® (carbamazepine), Lyrica® (pregabalin), Cymbalta® (duloxetine), Topamax® (topiramate), Dilantin®(phenytoin), and tricyclic antidepressant medications. If your doctor believes that the sensations are related to an acute MS attack, steroids might be helpful.
In addition, immunomodulating MS treatments are designed to reduce further damage which may otherwise cause an increase in symptoms. The six FDA-approved disease-modifying therapies (DMTs) for MS are: Avonex ® (interferon beta 1-a); Betaseron® (interferon beta 1-b); Rebif® (interferon beta 1-a); Copaxone® (glatiramer acetate); Novantrone® (mitoxantrone); and Tysabri® (natalizumab). The first four therapies listed are given via injection at home, while the latter two are given via IV infusion at a medical facility. For more information about these therapies, please see the Summer 2008 issue of The Motivator. This may be viewed, downloaded, or ordered through MSAA's website at www.mymsaa.org and selecting "publications." You may also call MSAA at (800) 532-7667to request a copy or to speak with a Helpline consultant.
Q: I am 28 years old and I live in Ireland. I am a social worker and I work with people with physical and intellectual disabilities. I was diagnosed with MS this past summer, so everything is still very new. I am taking Rebif three times a week and feeling okay on it. Do you think that the MS treatment is better in the United States, or is it the same allover the world, as my doctor has told me? I've always felt that America is so much more advanced in many things, especially in terms of medical treatment.
A: Treatments for MS care are similar in Ireland and in the United States. In fact, the standard treatments for MS are available worldwide. These are helping to control the disease, treat the symptoms, increase functions such as mobility, increase employability, and provide support to family and friends. New MS treatments are being developed in many countries, with scientists and physicians working together internationally toward a common goal. You have access to the best available treatments in Ireland, and the neurologists in your country are very well trained. I wish you all the best.
Q: I am 61 years old. I was diagnosed with MS in 1981 and right now I can't stand or walk. Sometimes my body gets too hot while sleeping with just a sheet at a room temperature of 60 degrees. I become so hot, I must remove the sheet and turn on my two tablefans using remote controls. Also, I can't sweat at all. Is this a common symptomof MS? I have been on Copaxone for one year and I can feel significant improvement. I'm hoping that one day I will be able to walk again.
A: It is good to know that you feel better on Copaxone. Your feeling of being too hot may be related to your reduced ability to sweat, since sweating is one of the body 's ways to reduce body heat. A cool bath before bedtime or a cooling vest or other device may be helpful.
MSAA has a Cooling Equipment Distribution Program for individuals with MS who are sensitive to heat. Various types of cooling apparel (such as vests, neck wraps, and wrist bands) are available at no charge to individuals who qualify. Please visit www.mymsaa.org/programs/cooling or call MSAA at (800) 532-7667 for details. These same items may also be purchased through companies which specialize in this type of technology.
Sweating is controlled by the autonomic nervous system, which can be affected in MS, although less commonly than other parts of the nervous system. On the other hand, some MS patients complain of excessive sweating. Everyone is different. I would recommend that you check with your doctor to make certain you are not having any other problems associated with feeling hot. A fluctuating fever can make you feel either excessively cold or hot, so taking your temperature is another good idea. Report any fever to your physician, as this could mean that you may have an infection or other health issue.
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Jack Burks, MD, is a neurologist, chief medical officer for MSAA, clinical professor of neurology at the University of Nevada in Reno, Nevada, and member of the Clinical Advisory Committee of the NMSS. He has edited two MS textbooks. Previously, Dr. Burks established the Rocky Mountain MS Center and has served on several Boards of Directors, including the American Society of Neurorehabilitation (past president), the Colorado Neurological Institute, the American Academy of Neurology, and the Consortium of MS Centers. In recent years, he has lectured in more than 30 countries.Back
|Last Updated on Monday, 25 March 2013 11:37|