Ask the Experts: Living with MS Questions
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Q: Can you feel brain lesions when they begin or are active?
Q: I am newly diagnosed RRMS just started Betaseron injections, and on my second RX of Nuvigil. I have suffered from migraines for 20 years, and they are worse now than ever. The Nuvigil only gives energy, does not help with concentration. What type of medications are available for pain and concentration?
A: Twenty years is a long time to be in pain. Have you seen a headache specialist? If not that would be a good place to start. Pain is very individual and treatment interventions are tailor made. Unfortunately interferons may increase headaches—so if your headaches have become worse since starting betaseron you should talk to your healthcare provider. The inability to concentrate may be effected by many things including fatigue, depression and certain medications. You need to discuss this with your healthcare provider to develop a game plan.
Lynn Stazzone, RN, MS, NP
January 2013
Q: Can you feel brain lesions when they begin or are active?
A: The direct answer is no. The brain and spinal cord don't transmit pain. Surgeons can do operations on the brain, using local anesthetics only on the skin and bone, but the brain can't feel things.
However, many patients with MS say they can feel it when they have a flare-up. They feel tired, out of sorts, "know there's something wrong." This isn't a surprise. An attack of MS involves inflammation, like an attack of rheumatoid arthritis causes inflammation. That sends signals that you can perceive.
David M. Dawson, MD
January 2013
Q: A few years ago, my neurologist determined my MS had moved into the secondary-progressive type. Last year, I sprained my ankle; a few weeks ago, I had a serious knee injury (not MS-related). Do injuries contribute to overall progression and/or permanently reduced function in the injured area(s)?
A: Your MS may and likely does put you at risk for injuries. Injured parts impact your overall function and require rehabilitation and precaution. Trauma injuries per se have no direct impact on the disease process. Co-morbidities maybe additive in regards to overall functioning (depression, orthopedic disorders) and need to be addressed and overcome. Your neurologist, a physiatrist (rehabilitation physician), physical and occupational therapy can all be helpful, as can psychosocial input (if necessary).
Linda Y. Buchwald, MD
November 2012
Q: I've been diagonosed with MS since 2011 and I am currently taking Tysabri... Its about that time for my next infusion...My question is why is it when its about that time for my next infusion I begin to feel real tired and drained. I got up this mornig and just out the blue I fell.
A: Many patients treated with Tysabri describe a "wearing off" feeling in the days preceding their next infusion. The most common symptoms reported are fatigue, tiredness, foggy-mindedness, and a feeling of being "worn out." We have seen this in many but not all of our patients treated with Tysabri. It is important to understand that based on the scientific data, the medication is still "working" through the 4-week treatment interval, and for a short time thereafter. At this point in time, there is no proven explanation for the fatigue and other symptoms patients occasionally note in the few days prior to their next infusion.
Ellen Lathi, MD
December 2012
Q: I am a 51 year old male, I was diagnosed with MS three days before my birthday. At first they called it Transverse Myelitis, with L'Hermittes. I have many symptoms that have not gone away in over two years. They found lesions at t4-t5. meds don't seem to help me. why is this?
A: I am sorry to hear this occurred around your birthday. MS lesions including transverse myelitis can cause permanent symptoms, because often the scar does not fully heal. The goal of most MS disease-modifying medications is to prevent new lesions from forming, however most don't necessarily help old lesions heal.
Tanuja Chitnis M.D.
May 2012
Q: I was diagnosed back 1999, I have been taking Tysabri since mid 2010. This past month I developed an acute pain in my lower left part of my stomach and got diagnosed with diverticulitis. Was this in any way realted to the new MS treatment that I am on now? Will this affect my MS symptoms in any way?
A: I can find no published relationship between Tysabri and diverticulitis. Diverticulits has no effect on MS except that during attacks of the bowel disorder, MS symptoms may become transiently worse in much the same way that phenomenon often occurs after a urinary tract infection.
Arthur Safran, MD
December 2011
Q: I recently read an article that says that a glucosamine vitamin has found positive results for ms patients. I have progressive ms & am currently taking aspirin,ativan, buproprion, flexeril, metoprolol, fludrocortizone, & copaxone. Should I take glucosamine & does it have any adverse reactions with my current meds?
A: There is no reliable evidence a beneficial effect of glucosamine on MS. There should be no interference with other medications. It made produce allergic effects including swelling of the lips, itching or rash. It is a natural substance and a normal component of cartilege. I can find no evidence to suggest it would interfere with the other medications you use. I hope this is helpful.
Arthur Safran, MD
October 2011
Q: I am a 30 year old female living with ms. I wanted to know if this disease can run in the family because my father and uncle both passed away from it and I've also been having symptoms of attacks which come and go on the left side of my body. It goes and comes for a minute or two. What could this be? I haven't lost mobility but the feeling is worse when I sit and get up or even just standing. What do I do? What is my life span?
A: Because of your family history of MS, you are at slightly higher risk than the general population. Your risk is in the range of 2-4%, whereas someone without a family history has an risk of about 0.1%. Given the symptoms that you are experiencing it is best for you to be evaluated by a neurologist familiar with multiple sclerosis.
Studies show that MS patients live an almost normal lifespan. Thanks to newly available treatments the prognosis for MS is very good. With early and effective treatment most MS patients continue to be active, working and productive.
Best regards,
Tanuja Chitnis M.D.
September 2011
Q: When I am experiencing MS related symptoms (which are burning, tightness, numbing of muscles), should I cut down on my exercise program? I have been exercising and lifting weights regularly for 10 years, and it seems to be very difficult lately when I have these symptoms to complete my normal routine. I am wondering if it would harm me to push myself, or should I listen to my body?
A: Generally exercise is health promoting and energizing. It helps one to take control over one's body and the impact of the effects of MS.It increases physical strength, fitness a sense of well being,; it improves bladder and bowel function, decreases depression, anger and fatigue.
One should always listen to one's body. If symptoms are increasing with exercise, reducing the extent and repetitions may be in order; exercising in a cool place, drinking adequate fluids is important; Interposing brief rest periods is helpful.; shorter sessions while maintaining the same program designed for a long session has the same value in either case. in terms of promoting health.
During relapses exercising should be curtailed, especially if steroids are being utilized to treat the attack; steroids and steroid withdrawal may loosen joints ligaments,etc. and generate musculoskeletal pain. Exercising at such times may challenge a further compromised system and result in injury. Many neurologists feel people with an MS relapse should be at rest especially when receiving steroids.
Weights should be restricted if there is significant neurological impairment; excessive weights may put one at risk for stress and strain of the musculoskeletal system and injury .
It is important to get a go ahead from your physician (neurologist ,doctor of rehabilitation medicine, other) and exercise should be under the supervision of a physical therapist familiar with MS. An exercise program should should target bo th cardiovascular fitness and should be customized to address your own specific MS symptoms and signs. Any such program should be progressed slowly.
Q: Since being diagnosed with MS 5 years ago, I have gained more than 20 lbs. I am more active since MS, taking water aerobics, 3 x weekly, as well as walking 2 dogs twice a day. My thyroid function is normal, and I am on a low cholesterol diet. What can I do? My neurologist doesn't seem to have an answer.
A: Having multiple sclerosis is not correlated with weight gain and therefore one should not expect to have to deal with gaining weight just because they have MS. There are factors that should be considered though. For instance, as we age, it is not uncommon to gain weight and sometimes medications might contribute to this problem. In addition, perhaps the amount of calories that you consume each day has changed and is out of balance with your energy expenditure. If there is no identified medical reason for your weight gain, I would recommend joining the Weight Watchers weight loss program. It is a balanced diet and you can eat normal food.
Q: My mother was just diagnosed as being in stage three of MS. It turns out she's had it for quite some time, but her Primary Care Physician ignored everything my mother told her she was feeling because my mother has a history of anxiety. Last week her PCP told both of us her face was nomb and she couldn't walk on her own due to stress and put my mother on tranquilizers. 3 days later we were in the ER with a possible stroke. I guess my question is where do we go from here? All the web sites say something different. The doctors are no help. I don't want to lose my mom, I'm just 22 and haven't even begun to live my life. I can't lose her. I don't know what to believe about MS other than the fact that it took my mothers best friend 10 years ago. i don't know if either of us are mentally strong enough to get thru this. If you could just point me in the right direction I would really appreciate it. My entire family and friends and members of the community that know about my mother are all going to do the MS walk, but can't we do anything else?? and how does some one cope with this?
A: This is a tough story, obviously. I really believe that you and many of your friends would love to be able to do something for your mother. But this is a fairly complicated situation, one which could benefit from the help of a good professional. It's also likely to take some time to get smoothed out. Patience will be a helpful part of all of this.
Unfortunately it sounds like there hasn't been effective communication between your mother, and her PCP. Perhaps the place to start would be to schedule an appointment with that doctor. The goal could be to talk long enough to clarify the communication, and establish a better understanding between the three of you. I know it seems to you like the doctor has been ignoring your mother and not treating her well. One of the hard parts about MS is that sometimes the symptoms DO seem like other, more common problems, like anxiety. But now that your mother has the diagnosis, there should be more careful examination of each symptom. This would certainly mean that the PCP work well with the neurologist who is overseeing the treatment of your mother's MS.
It also sounds like it would be useful to have a consult with a person who specializes in psychopharmacology, and is also familiar with MS. That person could help decide whether the medication your mother was given for anxiety was the best one for her, or whether a change would be in order.
A third step would be to get your mother involved with a therapist who could talk with her about the anxiety, the MS, and life as it has been influenced by the disease. Oftentimes this would be a different person than either the PCP or the medication specialist, since neither of these two specialists are necessarily specialists in the talking part of the treatment.
Depending on your health insurance coverage, it may be difficult to get a referral to a therapist. I would strongly encourage you to push hard to make that happen. I'm sure your mother could benefit. And perhaps you could even take part in a session or two, to help you sort out all of the things that have been happening.
Another avenue to explore is the MS Society itself, which has a network of mental health professionals and can provide a referral for you and your mother. They may also be running a group in your area which offers people the opportunity to talk with others who are coping with the disease. You can talk with one of the staff to see what might be appropriate for your
mother, and perhaps you also. Frequently a group can be very helpful, in that the disease is discussed by folks who have personal experiences to share.
Since I don't know your mother personally, I have no way of knowing how serious her illness is. But from the things you're saying, it sounds like there may be room for a good bit of optimism.
Q: I am newly diagnosed with RRMS. I would like to begin an exercise program and wondered if there are specific recommendations? I imagine it is beneficial, but I would not want to exacerbate my condition either. What sort of regimen is recommended? Could it help with fatigue, pain, or spasticity?
A: Exercise is usually beneficial for MS patients, as it is for anyone. Excessive fatigue should be avoided. You should ask your neurologist whether there any specific restrictions in your own situation.