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Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
Here is My Question:
I was on the Cleveland Clinic website since I will be going there later this month (the Mellen Center). My problems have been cognitive and I had a small relapse few short months ago and noticed memory, ear noises and a strange smell, plus other cognitive issues gotten a little worse. I noticed on their site that Interferon beta-1a (Avonex) and Interferon beta-1b (Betaseron) supposedly help or at least "slow" the cognitive problems getting worse? I was on Rebif initially but had to stop because of my liver. Does that mean I cannot take an interferon at all? At least, that's what I was told. I'm concerned about the cognition problems getting worse. They are very difficult to deal with sometimes. I'm really hoping the Mellen Center can help me with that! Also, I was given Aricept but quit taking it (I can't even remember why I did!) I looked it up thinking maybe I should try that again and there were so many side effects! Am I being silly worrying about those? I have almost burned our house down more than once. I'm constantly losing things, etc, and I get things so confused (dates, etc). I could go on and on but won't bore you with all that. I mainly want to know about the interferons (I am presently on Copaxone which my neurologist is very happy with) and Aricept. Do you think Aricept could help? It was in 2012 when I was diagnosed that I was given this medicine. I think I was overwhelmed at the time and decided I didn't need it. Perhaps I was wrong. Answer: While we cannot make specific recommendations we can comment in general about the issues of cognition and MS. Cognitive changes are unfortunately common in MS and can present in very subtle ways. There can be responders and non-responders to any disease modifying therapy. We hope that any medication used to suppress MS would stop progression of symptoms, including cognition, but each patient should be monitored individually. While medications like Aricept can be tried, it is routine to obtain formal neuropsychological evaluations and look for co-morbid issues that could effect cognition and be reversible. For example, patients with interrupted sleep can have significant cognitive difficulties. Sometimes, cognitive changes are side effects of medications. All of these issues should be taken into account by patients, neurologists and neuropsychologists. Benjamin M. Greenberg, MD, MHS Director, Transverse Myelitis, Neuromyelitis Optica and Pediatric Demyelinating Disease Programs Director, Neurosciences Clinical Research Center UT Southwestern Medical Center In regard to your symptoms, here are a few blogs you might want to read: http://www.healthcarejourney.com/hearing-or-smell-or-taste-changes.html http://www.healthcarejourney.com/cognitive-dysfunction.html Question:
I got a Baclofen pump 4 years ago, after tizanidine caused severe dry mouth and caused a blockage in my salivary glands. A few months later, I began to get back pain, which has continued to worsen. This pain is my worst problem! I see a PT at the Cleveland Clinic a few times a year (I live 4 hours away), and she has told me that the pump can cause trunk weakness. I'm considering getting the pump removed. What do you know about the connection between the pump and my back pain? Information about this is not easy to find and I am getting desperate. Thanks Answer: There are many potential causes to back pain and a thorough evaluation is necessary to discern the cause. Baclofen pumps can lead to trunk weakness which can lead to downstream effects leading to back pain. Alternatively, baclofen pumps can fail due to mechanical issues as well as scarring (which also could conceivably result in back pain). It would be impossible for me to assign the back pain directly to the baclofen pump. Consideration for that link would need to be evaluated (ideally) by the team that placed the pump and your neurologist. With any symptomatic therapy (ie, baclofen pump), the pros/cons need to be weighed to determine if it is providing some benefit that is worth continuing it while trying to treat the pain using a different modality. A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Center Here is My Question:
My diagnosis began with Transverse Myelitis and now Relapsing Remitting MS. Took many drug alterations to alleviate symptoms and have been on drug cocktail for many years including Avonex, Baclofen, Lyrica and Amantadine. Can Myelitis occur again? Symptoms worsening again in addition to severe contractures of muscles in lower extremities. Added Magnesium and Klonopin not working. Answer: Anyone with multiple sclerosis can have relapses (sometimes called exacerbations, attacks or flares). Some of these relapses can be inflammation in the spinal cord – called myelitis. Differentiating between a new relapse and a recurrence of old symptoms can be difficult. If you have new symptoms that have never been experienced before, you should contact your clinician to determine if an evaluation for a relapse should be pursued. If you have recurrence of worsening of symptoms in a part of your body that has had prior symptoms, you may be having a pseudo exacerbation. These are very common and are not caused by new inflammation. They can be caused by changes in body temperature, lack of sleep, stress or infections. If symptoms recur or worsen, contact your clinician to seek out the best options for therapy. Benjamin M. Greenberg, MD, MHS Director, Transverse Myelitis, Neuromyelitis Optica and Pediatric Demyelinating Disease Programs Director, Neurosciences Clinical Research Center UT Southwestern Medical Center Childrens Medical Center Dallas, Texas Here is My Question:
My question is this: After many tests (Alzheimer's and dementia), the neurologist has said that MS is the cause of memory problems for a 63 year old man. Many say there's no way to really diagnose the difference of whether the memory loss is due to the MS or other causes, even with doing a spinal fluid. The reason I ask this question is because when he answers questions, he answers like it is two years ago... is there way to tell if MS is really causing his memory loss? Thank you. Answer: The pattern of cognitive disturbance in MS does differ from other disease states such as Alzheimer and other dementias. As our age advances, it can be more difficult to tease them apart. The best way of doing so is to undergo neuropsychological testing. This is a comprehensive series of tests (usually paper/pencil but can also include computer tasks) that is administered in a controlled environment and interpreted by a neuropsychologist. These tests can last hours, and occasionally can be split up into consecutive days in order to minimize the effect of fatigue on the results. The neuropsychologist will compare the test-takers performance to those of similar age and background to ultimately come to an informed/educated conclusion regarding the cause of the cognitive dysfunction. These results can also help to craft a rehabilitative program (ie, for memory) that can be used to help the patient leverage their cognitive strengths to help compensate for any weaknesses. I'd recommend speaking with the neurologist about this, if not already done. A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Center Question:
Hi again, I previously asked whether Aubagio was my next best option. Well, after 5 weeks and further symptoms that hasn't worked out for me either. So that's Copaxone, Rebif, Cytoxan, Tysabri, Rituxan, Plasmapheresis, monthly steroids, Copaxone again, Tecfidera & Aubagio I've tried thus far, none working for me as I continued to progress over the last 20yrs. If I were your patient, now considered Progressive-Relapsing, where would you suggest I go from here? A friend of mine is stable on Methotrexate-similarly disabled as me and has tried everything. I had marked progression on Rituxan & the 2 orals. I am in a scooter full time & as of the past year mostly unable to go anywhere but doctor's appointments. Any further progression & I will be unable to care for myself/live independently. Any advice is appreciated! (I see my MS Specialist neuro next week). Help!! Answer: I'm sorry to hear of your difficulties with the MS despite the various therapeutics you have tried. I think it is important to keep in mind that all of the disease modifying therapies (DMTs) are partially effective. Sometimes we get lucky and a patient's disease seems to go into a long-lasting remission after going on a DMT. When this happens, it may be that the DMT chosen is a near "perfect fit" for the individuals type of MS, or it was a coincidence and their MS was going to quiet down anyway. However, for many patients, we do expect to see some breakthrough disease activity, even on a good DMT. Therefore, reasonable expectations for the DMTs must be understood. I also think it is worth noting that the DMTs don't necessarily exert their full influence immediately, but can take some time (on the order of months). I would hesitate on labeling any DMT as a failure based on symptoms that started shortly after initiating the DMT. Lastly, the indication for a DMT (in my mind) is evidence of inflammatory disease activity (ie, confirmed MS relapse, new or enlarging lesions on the MRI, or contrast enhancing lesions). Unfortunately, there is no proven therapy for patients who have transitioned from the relapsing/inflammatory phase of the disease to the progressive phase. I do share your concern about progression and doing everything possible to retain as much of that as possible (with the end goal of retaining independent function). If your neurologist feels that you are still in the inflammatory phase of the disease (ie, you could still benefit from a DMT), then there is the new biologic (Lemtrada). Patients in the studies of Lemtrada who received this demonstrated an attenuated progression of disability compared to Avonex. This drug is not something to take lightly as it has a significant risk of autoimmune disorders associated with it. If your neurologist feels that you are no longer in the inflammatory phase of the disease, then a focus on rehabilitative medicine and occupation therapy to maximize functional independence is warranted (this can be used in addition to DMTs as well). I hope this helps. A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Center |
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