Ask the Doctor
By Dr. Jack Burks
Editor's Note: MSAA receives many questions for our "Ask the Doctor" column. The following questions and answers have been summarized to allow for easier reading and more questions to be answered. We regret that not all of the questions may be addressed in this column, and we recommend that anyone with questions contact MSAA's Helpline at (800) 532-7667, to speak with a Helpline consultant.
Q: Do you know of any potential reactions to artificial sweeteners? After many years of testing, I was finally diagnosed with MS and have since been taking Copaxone. I am doing well, but the numbness I sometimes experience seems to occur after using artificial sweeteners on a regular basis.
A: Numbness can be caused by many factors. Artificial sweeteners, especially aspartame, have been accused of causing numerous symptoms, including numbness - with or without MS. The answers regarding the use of artificial sweeteners are not readily available in the MS scientific literature to warrant action. The FDA has not found credible evidence to remove them from the market.
Q: I am 75 and was diagnosed with MS in 1988. I can still walk and do well for myself. After 10 years of taking Avonex, I have stopped the medication since my last two MRIs have shown no progression. My most common symptoms are stinging, burning, tingling, and weakness in my limbs, but the most debilitating symptom for the past 20 years is the sensation of swelling in my head (as well as dizziness and bouts of vertigo). The pain builds to the point that I suffer terribly. Xanax is the only medication that helps at all. I found that Xanax contains a certain amino acid, and since this amino acid gives me some relief, would you recommend a spectroscopy test to measure my brain chemistry?
A: Your MS history is complicated, but your question is simple. Is a magnetic resonance (MR) spectroscopy warranted? The answer is "no." MR spectroscopy in MS is still an experimental "work in progress" test. It is not a test that has been used routinely in MS to evaluate chemical imbalances. MR spectroscopy may be useful for testing with MS in the future, but not yet.
I am pleased that Xanax helps the "swelling in your head" sensation. Let me offer some ideas on your other MS issues. You stopped Avonex because your MRI has not shown any progression. I hope you have considered that Avonex might be a reason for your lack of disease progression. If so, Avonex might be worth continuing, especially if you are tolerating it well with few side effects. Your doctor can help you with this decision.
Has your MS stopped progressing on its own? In my opinion, by the age of 75, some patients may experience MS "burn out," where they progress very little. However, you still have some very bothersome symptoms, such as burning, tingling, and stinging sensations, as well as weakness, dizziness, and vertigo. Some different medications and management strategies might be helpful for you. For example, you mention weakness in your limbs as a symptom. A new drug called Ampyra was recently approved by the FDA to help some MS patients with walking. However, it was not tested in people over the age of 65. Again, your doctor can help you understand your treatment options. Your doctor can also help you explore other potential MS symptoms such as bowel, bladder, or sexual problems, which may also respond to treatment.
Q: I am 57 and was diagnosed with MS in 1988. I also have fibromyalgia and take ibuprofen almost daily for pain. I do not take any medication for my MS, which aside from dizziness and balance issues, only flares up about every five years - and I bounce back fairly well. What is your feeling about no treatment for this type of MS?
A: The treatments for MS have helped many, many people since 1993. Asking if treatment is right for you is a good question for your doctor, who knows you best. Without treatment, you have MS symptoms (dizziness and balance issues) and an attack every five years with good recovery. For every MS attack, there are about 10 new lesions in the brain that are silent. Therefore, you may benefit from an MS expert's opinion.
I do not know if your neurological examination and MRI results show additional, silent disease activity in your brain. Do you have trouble with walking, fatigue, or muscle spasms? Do you have any issues with bladder, bowel, or sexual functions? Are you experiencing any cognitive changes, such as problems with memory or decision making?
About 10 to 15 percent of MS patients have "benign" MS and do okay without treatment. However, it is hard to know your current state of your MS. Are you accumulating more disability with or without your specific attacks? Are you more likely to run into MS problems in the future? To answer these questions, I would recommend a thorough history, a complete exam, an MRI, a walking evaluation, and other testing. In the end, you must decide the treatment issue, but your doctor can help you with that decision.
If you are developing more disability and MRI damage, I would suggest that you explore other MS treatment options before you have more problems. In addition to disease-modifying therapies, other treatments might help your dizziness and balance issues. Certain medications may be of help, and a physical therapist (PT) with experience in MS can be helpful with improving balance.
In summary, now is the time to regroup and look at all of your options. I suspect that may be why you wrote for my thoughts on your condition. I assume there are many different professionals with MS expertise who can help you in your local area. If you need assistance with finding a professional nearby, please call MSAA's Helpline at (800) 532-7667.
Q: I was diagnosed in 2007 and have been taking Copaxone. My previous neurologist has retired, and my new one keeps asking if I want to switch to Avonex. My former neurologist told me I could only take Copaxone, since the interferons can cause anemia. I have Beta Thalessemia Minor and my blood work is already off, so I'm afraid I would get worse. Are there risks with the interferons if one is already anemic?
A: Answering the question of whether you should switch from Copaxone to an interferon reminds me of the saying, "If it ain't broke, don't fix it." Since Copaxone seems to be helping to keep your MS under control, why would you want to switch? I have had patients on Copaxone for many years who are doing very well. They may also do well on interferons, but why take a chance?
Also, your history of anemia makes Copaxone an even better first choice for an MS medication. This is because your former doctor is correct that interferons are more likely than Copaxone to reduce the blood count (of red and/or white blood cells), although this is uncommon. I would ask your doctor why he or she wants you to switch. I may be missing something that concerns your current doctor. A second opinion from an MS expert at an MS center in your area is another possible course of action, if you are not sure of what to do.
Q: I was diagnosed with RRMS in 1991, when I was 21 years old. At that time, I averaged 24 exacerbations per year. I was enrolled in the original Betaseron lottery, and over the years, I have taken Betaseron, Avonex, Copaxone, cladrabine (experimentally), and Novantrone. I recently finished treatment with Novantone after three years, which reduced my exacerbations to about once per year. I use forearm crutches and a wheelchair, plus I have a Baclofen pump to help with my chronic pain syndrome.
A: Your MS is obviously very complex, since you have taken five different MS medications. However, it appears that you are not taking any MS medication at this time. If you and your doctor want another treatment option, I would consider Tysabri, which is administered via an IV infusion every four weeks, or Gilenya, which is a new pill taken once per day orally. Each is effective for most MS patients - and each has its own potential side effects. I refer you to the latest MS Research Update in MSAA's Summer/Fall 2010 issue of The Motivator for more specific details on both of these drugs. However, the decision should be made between you and your doctor.
Q: I was diagnosed with MS in 2002. I was doing well, but once I started having balance problems, foot drop, and my legs began feeling heavy, I was put on Tysabri. This treatment is working for me, but despite daily exercise, I am still having trouble with my legs and balance. Can you tell me what else I can do for these symptoms?
A: I am pleased that you are doing well on Tysabri. I suspect you are talking about trouble walking when you mention "leg" and "balance" issues. I suggest you ask your doctor about Ampyra for walking. Also, I would suggest a re-evaluation of your exercise program with a physical therapist (PT). Find a PT who specifically has experience with MS. Physical therapy can be of great help with an ongoing wellness plan for better coping with the symptoms of MS.
Poor balance is especially important, since it may result in a fall. A PT can also help with reducing problems with balance. Aids for balance, such as a cane, may be another area to explore.
Q: I was initially diagnosed with MS in 2000, after a brain MRI showed six lesions consistent with MS. However, two spinal taps have revealed zero bands. I have had countless tests to rule out any other diseases, but my doctor is still unsure about the MS, given the results of my spinal taps. Repeated MRIs showed no new lesions, until three months ago, when I had more than 12 hyper-intense lesions consistent with MS.
I was briefly taking Copaxone but nothing else since then. I have sought second and third opinions, but both doctors said to "wait and see," after one wasn't sure and the other wanted to pump me full of pills. My doctor wants me to have yet another spinal tap, but I am tapped out on spinal taps. I have symptoms of MS, lesions on MRI, and have ruled out other conditions. Are bands really needed to confirm my diagnosis?
A: I agree with you. The diagnosis of RRMS in your situation is made mainly on:
Your MRI with 12 new lesions is worrisome for more MS disease activity, which may warrant treatment. In summary, I recommend that you have a "heart-to-heart" talk with your doctor and inform him or her of your legitimate concern. Find out if there are other issues aside from the lack of spinal fluid "bands." If your concerns are not resolved, you may want to seek another opinion at an MS center in your area.The medical staff there may be more familiar with your types of problems in getting a diagnosis - which for many, is not easy with MS. If you need help in finding an MS center in your area, please call MSAA's Helpline at (800) 532-7667.
To Submit Questions to Ask the Doctor...
If you have a question that you would like to ask, please submit your question to:
Readers may also send in questions via email to email@example.com. Please be sure to write "Ask the Doctor" in the subject line.
Jack Burks, MD is the chief medical officer for MSAA. He is a neurologist and the director of program development at the Multiple Sclerosis Comprehensive Care Center, Holy Name Hospital, in Teaneck, New Jersey. Dr. Burks is a member of the Clinical Advisory Board of the NMSS. He has written and edited three MS textbooks, as well as numerous chapters and articles on MS. In recent years, he has lectured and evaluated patients in more than 30 countries.
|Last Updated on Tuesday, 16 July 2013 14:46|