Welcome to the Virtual MS Center!
Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
Here is My Question:
Hi. In 2007 I had three days where my left side of face and arm were numb. My MRI showed a lot of white matter in my brain. There were no lesions on my spine and my spinal tap came back clear. The same summer they found a PFO and closed it. Suspicions were that I had a mini stroke. Fast forward three years and my left knee becomes numb. I see a different neurologist in a different state and after doing more MRIs and blood work he diagnoses me with MS. I was on Avonex for three years and now Tecfidera three years. Since then my brain MRI stayed the same, still no lesions on my spine or neck. I just moved again and the new neuro thinks I might not have MS. I have no had any more episodes. My only symptoms are a weak left leg, electricity shooting down my arms and in the past I had spastic toes. He wants to do another spinal tap. If this one comes back negative then he thinks I should go off the drugs. What is your opinion? I've doubted that I had MS this whole time. It was good to hear him say it before I expressed my opinion. Can an MS person really be this healthy for almost ten years now? Wondering about all the white matter lesions in my brain, but he thinks it could of been left over from possibly having mini strokes since my pfo was pretty large. Thank you! Answer: The diagnosis of Multiple Sclerosis requires doctors, usually neurologists, to exclude other potential causes of your symptoms or history, examination findings and diagnostic evaluation findings. To do this requires the doctor to have expertise in neurology and Multiple Sclerosis and expertise in the interpretation of MRI findings. They must also understand the necessity of waiting to make a diagnosis if there is insufficient information available to be confident in the diagnosis at the time of the initial evaluation. This is a complicated process that leads to many errors in practice. These errors include: 1. Misinterpretation of symptoms as presented by the patient 2. Failing to detect certain findings on examination or over interpreting findings 3. Failure to interpret MRI findings correctly. 4. Failure to recognize “red flags” in the diagnostic evaluation such as persistently normal spinal fluid or a stroke like presentation All of these errors are common and often lead to patients being placed on treatments unnecessarily Based on the information provided I can not tell you if your initial diagnosis was correct. You may benefit for the expertise of an MS specialist, if you have not already been evaluated by one. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Clinical Neurosciences Director Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I have a lesion from scan in October 2015. Now in December 2016, I have had 3 more scans and I still have active flaring. It is the same lesion. My MS doctor is ordering more blood testing and more scans of my body to see what is going on. He says it is abnormal for a lesion to be active for over a year and has continued to be active for over a year. Can you help me to understand what may be going on here?!!! Answer: The majority of enhancing (“active”) lesions in MS patients cease to enhance within a month. Persistent enhancing lesions for more than 6 months occurs rarely (< 5 %) and should prompt further investigation before assuming this is a chronically enhancing MS lesion. Possible causes of persistent enhancement for over a year (other than MS) include benign vascular malformations, such as capillary telangiectasia or cavernomas, a granulomatous process and some tumors. It is unlikely that an infectious process would cause asymptomatic enhancement for over a year. Further investigations to help sort out the cause could include gradient echo imaging (GRE) if not already done, MR spectroscopy, FDG PET scan and spinal fluid analysis Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Clinical Neurosciences Director Professor of Clinical Neurosciences University of California San Diego Here is My Question:
What would be the best MS therapy following treatments for cancer? Answer: Choice of DMT is driven not only by prior chemotherapy received, but a history of your disease course (ie, how aggressive the disease has been). The bigger question is when to initiate therapy after receiving chemotherapy for cancer. Many chemo therapies will indirectly treat MS, and caution is needed to avoid premature reintroduction of DMT when chemo therapy is still active in suppressing the immune system. Bottom line, the decision of when and with what to treat is a case by case decision. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Is it possible to have mainly cognitive issues when diagnosed with MS? I have recently started having issues with painful legs and hips but I can walk. My balance is a bit off (comes and goes) and I have terrible depression. I had an MRI couple months ago and they said I have a lot more lesions now than when I was originally diagnosed 4 years ago. I also a spinal tap at that time which helped diagnose it. I have memory issues, short term and memory looking back (such as my sister's wedding that I thew reception and baked cake...no memory of that and was shocked when I saw pictures with me in them!). I wrote a question earlier, so I apologize but failed to mention my depression. I get things so confused sometimes, like with directions, etc. So many I read talk about difficulty walking, like using a cane, etc. I don't have that problem thank goodness, although, I can't walk long or I get the pain. Anyway, just wondering, can I still have this disease if I don't have all that, but just cognitive (or mainly that is). When I was first diagnosed 4 years ago, I had terrible vertigo. Things were just spinning. I would wake up at night and things were spinning. I haven't had that for quite a long time. I get pins and needles, but the numbness and tingling I used to get a lot of, I haven't had for awhile. Yet, they are saying I have a lot more lesions. Been on Rebif, gilenya, copaxone and aubagio. I also had an aneurysm in 2015. They said that had nothing to do with my MS. In hospital for 2 months, so feeling very blessed to be here today. I just don't know what to do about ms. I want to take nothing. I don't know what this new neuro will tell me. I just wanted another opinion. I feel I may have repeated things here but don't remember, so again apologize for that. I stopped Aubagio due to High blood pressure that I am still being treated for. That was a few months ago that I stopped. Do I really have to take something? Would things get worse? I am 68. Thanks you for your kindness and answer. Answer: Yes, cognitive dysfunction can be a presenting complaint and the predominant feature of MS. In fact, the unfortunately coined term "benign MS" which defined patients with longer duration of disease with little residual disability in physical function (i.e., walking) have demonstrated cognitive disability which in some patients can be quite disabling. Depression, however, can mimic cognitive dysfunction, which can significantly improve with successful treatment of the depression. In cases of confusion, undergoing neuropsychological testing can help determining what is the cause of the cognitive complaints and offer rehabilitative strategies. At the age of 68, it is possible that you may not benefit from DMTs. There are blogs about this on this site. Ultimately, working with an MS specialist to carefully document your clinical course and response to therapies via MRI can help answer the question if DMTs are indicated in your specific case. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I was diagnosed with psoriasis in 1992, diagnosed with MS in 2011, and JC virus in 2015. Ten days ago I started getting a cold and my ear has been plugged up since. I am almost finished w/ the Amoxicillion. I've tried peroxied twice. Could it be the JC virus going into PML? Answer: While it is always best to see your clinician for things such as this, it does not sound like typical PML. Usually, PML (caused by replication of the JC virus in the brain) causes a neurologic symptom such as progressive weakness, vision changes or cognitive changes. It is not usually associated with respiratory symptoms or ear symptoms. Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Ambulatory Care Department of Neurology and Neurotherapeutics Director, Transverse Myelitis, Neuromyelitis Optica Programs Co-Director, Pediatric CONQUER Program UT Southwestern Medical Center Childrens Health Dallas, Texas Here is My Question:
I was diagnosed with MS 4 years ago. I was told I had only 2 lesions; they did a spinal tap which said was likely MS but should have MS to "prove". I know my wording is wrong. I have been to 4 different neurologists who all agreed. Recently I had another MRI and have a lot more lesions. I have been on Rebif, Gilenya, Copaxone and Aubagio and have had Liver problems, etc with those meds. I had to stop Aubagio due to very high blood pressure and that scared me because in 2015 I had an aneurysm and had very high blood pressure so I am scared of that happening again. The neurologist I was seeing could never seem to see me but I saw his assistant. She was the first one to tell me my MRIs were much worse and said I must go on another med and just gave me a bunch of pamphlets, and told me to go home and decide which one I wanted to try. I can't even see my neuro! So I have made a new appointment with with a new one in January. He is from the same hospital that did my last MRI. Now, I'm thinking of doing nothing medication wise, as I haven't had a relapse since my aneurysm last year. I'm just wondering how I could have more lesions and have no relapse. Is it possible to have this and not have a relapse or should I not be so "comfortable" with that. I don't like all the side effects from the MS medications but I'm also scared in a way to let things go because my symptoms have been mostly cognitive. Memory, getting things confused, etc, just too hard put it all down here. My husband gets angry because I can't seem to follow directions on how to get somewhere and then I can never remember how we did it. I can't even remember my sisters wedding that was 45 years ago. She said I did the reception for her and made her cake! I still didn't believe it until I saw pictures and there I was! Just trying to give you examples of my memory issue. That's the part that scares me, as I am 68. I fear that will only get worse, of course. I just don't know what to do. I've noticed the hot flashes have started again and the pins and needles in my feet. What should I do? I want to tell this new neuro I don't want medication but just a neuro I can count on or call if I have a problem. Is that crazy? I'm just so confused. I think if I have lots more lesions then I should be much worse, shouldn't I? Would so appreciate an opinion here. Thank you so much! Answer: Let’s consider the facts in your case so we can lessen your confusion enough to help with your decision. In answering your question we will assume you do have multiple sclerosis , although this is not at all clear from your question. 1. The first fact is that you are 68 years old and only diagnosed with MS 4 years ago. While it is increasingly common to diagnosis MS in older people, this is still rare. Most people diagnosed with MS at your age have probably had MS already for many years and often do not respond to disease modifying treatments as well as younger people. In fact we have very little information on how to treat MS in your age group. This is because almost all clinical trials exclude people who are your age from participation. 2. Many people your age have other medical conditions, such as high blood pressure and diabetes, that can also cause white spots on an MRI scan. This can make it difficult to interpret changes over time. 3. Do not be concerned about doctors telling you there are more white matter lesions, even though you have experienced no relapses. First of all, relapses are rare at your age. Second, even at younger ages we see far more MRI activity (new lesions over time) than we see relapses. This is what makes MRI such a wonderful way to monitor the activity of your disease. So here is my suggestion for your visit with the new neurologist in January 1. Ask the new doctor to convince you that you have Multiple Sclerosis 2. If you do have MS, ask him or her review the MRI scans with you and show you the changes over time 3. Ask him or her to review the possible reasons for your cognitive complaints. One of the most common reasons for this complaint is anxiety and depression 4. Ask him or her to review all the options for treatment vs just monitoring your condition over time This will probably require 2 or 3 separate visits but will be worth the effort. Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Clinical Neurosciences Director Professor of Clinical Neurosciences University of California San Diego ![]() Question: I'm cooking Christmas dinner and I am a salt fanatic. My husband keeps telling me that I should reduce my salt intake and that that will help my symptoms. How bad is salt for someone with multiple sclerosis and should I not salt the Christmas turkey? ;) Answer: Here is the answer from a previous blog... Q. What is the connection between a high sodium diet and MS? A. There is some very preliminary evidence from animal experiences and cell cultures that a high sodium diet may drive your immune system in the direction of a stronger inflammatory response that theoretically could result in increased damage in MS patients. While this data is not ready for prime time, so to speak, there are other health reasons to beware of using too much salt in your diet. The bottom line for now is to moderate your salt intake for overall health reasons. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Clinical Neurosciences Director Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I have been on Tecfidera for a year now. I am also missing 8 organs including my large intestine. After a year the few weeks I have been having out of control blood pressure 205/155 and heart rate of 115. Can Tecfidera cause a heart attack or stroke? Answer: I am not aware of any data linking the use of Tecfidera to the development of vascular disease or hypertension. Tecfidera was associated with kidney toxicity in preclinical animal studies but this was not seen in human studies. Kidney problems can elevate blood pressure. You or your doctor should report this problem to Biogen Inc or the FDA. This is the only way we can learn about potential drug related problems in people who would not have been eligible for the clinical trials or to discover rare side effects that occur too infrequently to be observed in a clinical trial. You certainly fall into the former group since it is unlikely that a person missing 8 organs would have been eligible to participate in the Tecfidera clinical trial Here is the contact information for reporting side effects (taken directly from the package insert):To report SUSPECTED ADVERSE REACTIONS, contact Biogen Idec at 1-800-456-2255 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Clinical Neurosciences Director Professor of Clinical Neurosciences University of California San Diego Question:
Is it dangerous to take the drugs Copaxone and Cytoxan at the same time? Answer: It is not dangerous to take copaxone and cyclophosphamide at the same time. However, I am not aware of any studies demonstrating a benefit of this combination. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Clinical Neurosciences Director Professor of Clinical Neurosciences University of California San Diego I'm just been diagnosed with multiple sclerosis and don't know where to start with treatment12/14/2016
Question:
Hi, I was just diagnosed with MS overseas and have no insurance in the US to pursue treatment or even just a medical check-in (and I can't afford what they are quoting me). I am a US citizen returning in the next month. What resources can you recommend to provide guidance? I'm retired and don't know where to start. Answer: Use this link to go to our "MS HealthCare Journey" and click on "I've Just Been Diagnosed with MS" for a pathway with links and resources to use for guidance. Please write back after using this pathway to let us know if it was helpful. If you are able to make it to Temecula, CA on March 18th, 2017 please join us at South Coast Winery and Spa from 10am-3pm to MEET MS experts from all different fields and LEARN ways to empower yourself to manage your MS! This is a FREE event (free food, admission, and parking). This is the first so if you can make it please do (REGISTRATION is REQUIRED, so click here to register)! If you can't make it we are hoping to begin these all across the country so stay tuned! It is going to be a very INTERACTIVE day filled with education and fun! We hope you can join us! If you want to print out a copy of the flyer for the expo, click on the file below: ![]()
Question:
At night, simple tasks get harder and my memory gets worse. Why? Answer: Cognitive changes, including memory issues and slower processing are common in MS. Patients can have difficulty with multitasking and word finding. These cognitive challenges can be variable from day to day and there can be “good days and bad days”. Patients may also have times of day that are more challenging than others. Critical to this issue is to get evaluated by your health care provider to ensure there are not any extraneous factors that could be contributing (poor sleep, dehydration, dietary/nutrition, medication side effects, etc.) Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Ambulatory Care Department of Neurology and Neurotherapeutics Director, Transverse Myelitis, Neuromyelitis Optica Programs Co-Director, Pediatric CONQUER Program UT Southwestern Medical Center Childrens Health Dallas, Texas Here is My Question:
I had my spinal tap come back >5 O bands but my MRI shows no lesions. What does this mean? Answer: Oligoclonal bands indicate compartmentalized inflammation in the nervous system. It is not specific to any one disease, and sometimes it can be transient and resolve. 90%+ of MS patients have oligoclonal bands their entire life. Since you have a normal brain scan, it is impossible for me to interpret the lab finding. It would be best to follow up with the doctor who ordered the test to aid in interpretation. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I am a 55 year old female and have had MS for 13 years. I was started on Rebif but stopped because of skin issues with injections, started on Tysabri which was stopped because I'm JCV positive and was on Tysabri for 2 years, and then started on Aubagio which I've been on for 3.5 years. I feel like my symptoms have slowly been getting worse so my Neurologist recommended we try Rituximab. I am concerned because I know Aubagio lasts in the body for a long time. Do I need to wait a certain time period before starting Rituximab or do one of those elimination protocols? Also, because of my age and the suppression of the immune system Rituximab causes, my Neurologist is also recommending the Shingles vaccine before I start Rituximab. Is that safe for me considering I'm still on Aubagio? Answer: Rituximab is an excellent option to treat underlying MS. However, no disease modifying therapy will guarantee improvement in symptoms (they do cut down on inflammation occurring due to MS). I'd suggest you speak with your neurologist about what he/she expects to gain from using rituximab and develop a plan together to make sure that you are responding to the medication. This usually means semiannual clinic visits and occasional MRI scans. I would recommend the cholestyramine elimination protocol and have your terifunomide level checked afterwards. I always check a chicken pox (VZV titer) before ordering rituximab. If the titer is low, you should have the vaccine first and then wait at least a month before starting rituximab. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Is there a relatively common/standard frequency of MRIs to distinguish & monitor permanent and transitory inflammation as represented by white and black lesions? Spinal cord? Grey & white matter volume? Brain atrophy? Thanks. Answer: MRI volume measurements are not currently done in most clinical practice settings. The frequency of MRI monitoring for white matter lesions and enhancing lesions is not standardized. Most experts agree on the following: 1. A minimum of yearly MRI monitoring is warranted in the first 10 years of the symptomatic disease 2. Current MRI monitoring techniques have less value in clinical practice after 10 years of clinical disease, especially in those over 55 and those with progressive disease for several years Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I was diagnosed with MS at age 64. Symptoms began with altered sensation in the legs at first then progressively moving upwards. I was hospitalised a few months later when I had eye involvement and loss of balance etc and tests confirmed it was MS. Treatment with steroids improved the symptoms but they returned with a vengeance as soon as they were stopped. There was no remission at all so I was started on Tysabri soon after. The result was dramatic, vision completely back to normal after three infusions and all other symptoms greatly improved. I have been on tysabri for over 5 years now and gradually my balance and walking has deteriorated and my last MRI showed more lesions. I'm waiting on the result of a blood test to see if I've become resistant to tysabri. I am still JC negative. My question is what would be the better treatment if I stop Tysabri? The options I have been suggested to consider are Gilenya or Lemtrada. Answer: You ask a very difficult question. It appears you have late onset MS (age 64) with some initial inflammatory activity responding to Tysabri. Eventually the benefit from Tysabri treatment waned and your condition continued to worsen. It is unlikely that your continued worsening is due to the presence of Anti-Tysabri antibodies. Remember, Tysabri was not shown to be effective in the recent secondary progressive MS clinical trial. Options for you at this point depend on many factors including 1. Co Morbid health conditions 2. The presence of absence of inflammatory activity in the past 2 years 3. Insurance restrictions Certainly, Alemtuzumab (Lemtrada) and Ocrelizumab (not yet approved yet but likely to be approved any day now) are potential options. Unfortunately, there are few studies to guide you in your decision making since most studies exclude individuals in your age group and there is little evidence that any of the currently available disease modifying therapies benefit people with well established secondary progressive MS in any age group. If you have not already established care with a trained MS specialist, this may be a good time to see one for an opinion on further treatment. Good luck to you Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego #Tysabri |
PLEASE NOTE: This information/opinions on this site should be used as an information source only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
Archives
September 2024
Categories
All
|