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Question:
I am not sure I have MS but I have had pain in my hips and have noticed when I walk something has changed, I can't seem to walk increase my speed in walking. Other changes, are that my legs have felt weak or heavy at times. I must add that I have been diagnosed with Alkylosing Spondilitis years ago but only now am having problems. Thank you. Answer: Pain in the hips is not a direct symptom of MS and will certainly cause you to walk more slowly. See what your doctor thinks; I am not sure why you should specifically be concerned about MS based on the information you’ve provided. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
Can MS start in your finger? I've had a numb finger tip for 3 days on my ring finger on my right hand. It's just the finger tip. I went to my doctor and she said its probably nerve related and try not to bend my elbow or put pressure in the area. Someone mentioned MS to me, now I can't seem to shake the possibility. Answer: There is no reason for you to worry about MS based solely on numbness in the tip of your little finger. Of course, MS is one of the possible causes (there are probably over a thousand things that could cause this symptom) but this symptom is far more commonly caused by ulnar nerve compression at the elbow, the second most common entrapment neuropathy after carpal tunnel syndrome. Your doctor was correct. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I have pre-existing low stage, non-invasive transitional cell carcinoma (found during investigations for MS). I have an employment history of chemical exposure that likely triggered both. I have been using Copaxone since diagnosis however my neurologist has asked me to step up treatment. The bladder cancer is immune mediated; for that reason, anything that suppresses my immune system will likely worsen the cancer. Is there an MS treatment that will somehow work for both, or at least not worsen the bladder cancer? I've seen that rituximab is used for some cancers however bladder cancer is not one of them. Any input would be really appreciated, even as a starting point for discussions with my neurologist and urologist. They don't have much experience dealing with both conditions. Thank you so much. My cancer is recurrent. Answer: You and your doctors will need to have a discussion of relative risks, specifically the risk of worsening your transitional cell carcinoma through the use of potentially unnecessary MS disease modifying therapies versus the risk of under-treating your MS. The only drug to definitely avoid is cyclophosphamide, which is associated with the development of transitional cell carcinoma. There was some initial concern that Tecfidera may be uniquely associated with transitional cell carcinoma but this is not a current concern and some are talking about studying Tecfidera as a treatment of cancer. Aubagio is not cleared by the kidneys and could be an option; it is easy to clear Aubagio out of your system quickly. Highly active DMTs that are selectively cytotoxic (Rituximab, Lemtrada, Ocrevus) may alter cytotoxic responses and immune regulation in negative ways but this would be a larger concern with Lemtrada. Tysabri is not cytotoxic and may be a good choice if you are JCV antibody negative and need a highly active drug. I hope this helps you and your doctors with this decision. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I am currently on Gilenya for my MS and am being considered for a knee replacement surgery. I know I can't be without my Gilenya for more than 14 days or I have to complete the observation process again. Because Gilenya lowers my lymphocytes, should I be holding the Gilenya before and/or after my surgery? Answer: I know of no evidence that Gilenya alters healing from surgery, increases the rate of common bacterial infections associated with surgery or increases the risk of bleeding with surgery The surgical team and particularly the anesthesiologists should review the FDA package insert for Gilenya and pay particular attention to the following: 1. Your low white blood count and lymphocyte count on Gilenya is expected and not abnormal. 2. Avoid the use of class I and IIIa anti-arrhythmic drugs 3. Drugs that can prolong the heart’s QT interval should only be initiated cautiously Based on the information you’ve provided , there is no reason to stop taking the Gilenya before your surgery. It takes 1-2 months for the pharmacodynamic effects of the drug to wear off after your last dose, and stopping it for this long of an interval places you at an unnecessary risk for a relapse. The final decision should be made by your own physicians who have a more intimate knowledge of your medical condition and concurrent medications. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
Can you get the JC virus (infection) even if you don't have MS? Answer: J.C. Virus is ubiquitous, meaning that is located throughout the environment and nearly everyone is exposed to the virus at some point in their life; researchers estimate that the virus resides latently in the kidneys and certain bone marrow cells in up to 90% of adults. This virus has no special relationship to MS patients. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I have multiple sclerosis and and I have been on Rebif for 4 years. May I drink Peruvian Maca? Answer: We know of no adverse interactions between Peruvian Maca and any of the MS disease modifying therapies, including Rebif. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I go to sleep with my legs hurting but when I wake up they are either numb or beyond sore. What can I do to prevent this from happening or make it go away quickly? Answer: You can try to stretch your legs as soon as you wake up in the morning to see if that helps. It may also have to do with the position you sleep in, sometimes sleeping with a pillow between your knees can help (if you sleep on your side). Sarah Frank, PT, DPT, MSCS Outpatient Rehab Mt. Sinai Rehabilitation Hospital 490 Blue Hills Ave. Hartford, CT 06112 Here is My Question:
I am currently on Tysabri and used to the 2 hr infusions required. Since I am JC virus positive, I have recently been switched to Ocrevus but have been informed that my first infusion will take 5 hrs. Why is the infusion process so different? Thanks. Answer: Every infusion therapy and protocol is different depending on the characteristics of the drug being administered. For example:
Hope this helps. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego 200 West Arbor Dr Medical Offices North MC 8687 San Diego, CA 92103 619-543-3500 (Clinic phone) Here is My Question:
Will changing Tysabri regime from 4 weekly to 6 weekly make me more susceptible to infections like the common cold? Answer: Moving from an infusion every 4 weeks to every 6 weeks should not increase your risk of infection. A. Scott Nielsen MD MMSc Kaiser Permanente PLEASE NOTE: The information/opinions on this site should be used as an information resource 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. Here is My Question:
I would like to know how to understand an MS neuro "following"? If followed for 5 years and not dismissed, and the plan is for a 2 year interval brain MRI, am I in the clear? Or is the expectation more likely that McDonald criteria will be met eventually? This whole process is so confusing. What does it take to dismiss a possible MS patient? Or will I be stuck forever in "limbo"? Answer: Great question. 1. If your MRI scans have always been consistent with MS but there is no new clinical or MRI activity (relapses or new MRI lesions) after 5 years without treatment but you probably need to be monitored for 10 year or longer depending on your age (longer if under 46) 2. If your MRI scans are not consistent with MS, meaning they are normal or non-specific abnormalities only, and you have remained stable by clinical and MRI criteria (no relapses or new MRI lesions) for 5 years, then you probably do not need any further monitoring. Ask your doctor which situation fits you best. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I have just seen another neurologist. My symptoms indicate multiple sclerosis. Due to the MRI though they will not diagnose me. My family doctor and the ENT I saw both said it was a MS. Both doctors deferred to a neurologist for him to give me a diagnosis. Based on my MRI report though the neurologist will not diagnose me. He said I didn't fit the typical lesion pattern in my brain. This is what the MRI report said; " 10–11 foci of T2/FLAIR hyperintensity within the supratentorial cortical and periventricle white matter. These measure at 24–5 mm in size. I have been going to my doctor for almost 2 years with various neurological complaints. Everything else has been ruled out. Yet the neurologist I saw could not give me another explanation of what was going on. Over the course of what's been happening I've even questioned if I am doing this to myself. I went to a psychiatrist who assured me the symptoms were organic in nature. If this is not MS, great I don't want MS. Unfortunately, my symptoms are impacting my life. I had to use a cane for about nine months because I could hardly lift my left foot. Even now I trip over the toes of that foot. I now have tremors where I'm knocking things over when I try to reach for them. Do you know how hard it is to pencil in your eyebrows when you're shaking? I'm beginning to look like Bette Davis, in Whatever Happened to Baby Jane. LOL I am a little peeved at that neurologist. He had all my test results and had already made a decision before even seeing me that I did not have multiple sclerosis. His exam consisted of asking me to open my mouth and say ahh, listening to my heart and lungs. That's it. He didn't even ask what my symptoms were. When he walked in he said that he only had 15 minutes with me, and he always runs on time. He then proceeded to give me a referral to see another neurologist. I'm tired of getting handed off to another doctor because the doctor I am seeing doesn't have an answer and is not interested in trying to find out what's going on with me. I am a 55-year-old woman who has had various neurological symptoms since I was 26. I'm really good at ignoring symptoms. But it has gotten to the point I cannot ignore them anymore. Any advice would be more than appreciated. I live in a very small rural community in Ohio. I have been to the Cleveland clinic and that Dr. also said I didn't have MS. Fine if I don't have MS where do I go from here? And why does my doctor and my ENT both say I have it? As a sidenote, I'm sure you can tell I'm frustrated and concerned. Every time some medical person ask me if I'm anxious I tell them yes wouldn't you be anxious if you were sick and nobody was helping you? So I went on the Internet and I have been researching and become my own advocate. I use the national Institute of health library. So my research is a viable source. Unfortunately I made the mistake of mentioning something to the neurologist I jjust saw. He immediately became defensive and told me to Google the next doctor that I am going to be seeing. He then turned and walked out of the room and that was the end of the visit. I guess this is a philosophical question. If no one else is helping me why can"t I try to help myself. And why is that so wrong? Please feel free to edit this rather long question if needed. Answer: In a case such as yours, it is important to arrange a follow-up visit with the neurologist to discuss the cause of your symptoms. Please also understand that white spots on an MRI are not synonymous with MS in most cases. Misinterpretation of an MRI scan is one of the most common reasons for doctors, usually non neurologists, to misdiagnosis MS. If a good neurologist takes a full history and examination and reviews your images and things you have a conversion disorder, be open this possibility and ask them to refer you to someone who can help you. Many doctors are unwilling to tell people they have a conversion disorder because it takes a lot of time to help people with this type of problem. One thing is for sure: If you’ve experienced symptoms for 30 years and several neurologists still can not find anything wrong, it is probably not a serious problem and unlikely to be MS. But this does not mean you do not have problems that you need help with managing. I do not find that most psychiatrists are very helpful with patients who have conversion disorders. The best solution is a good physical and occupational therapist and a neurologist capable of working with you over time. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
It has been one year since my first MRI which shows 3 new brain lesions. 1 in the gray matter and 2 in the white matter. Doe this mean the MS is active? Answer: Unequivocal new white spots (also called T2 bright spots) on an MRI with an appearance typical of MS is an indication of activity since the prior MRI scan. This is more significant if the interval between the scans is relatively short, such as 6 to 12 months as in your case. If all that is seen is a new white spot, it is impossible to determine if this activity occurred a day after the initial scan or just in the past few weeks. This is most relevant if you started a new treatment sometime after the initial MRI scan and you are trying to determine if the new therapy is working well for you. It would not be possible to determine if the new white spot occurred before the new therapy started working or after the new therapy started working if you there was a gap in time between the first MRI scan and the start of treatment. However, if any of the new white spots enhanced after the administration of contrast (usually something called gadolinium) then the activity is more recent, usually in the past 2-4 weeks. You can type in "MRI" in the search box in the upper right corner of this page to read a lot more about MRIs and how to interpret them. Hope this helps Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I have had MS for about a year and a half. I am told that I will most likely be getting an MRI annually. I know during the MRI I have removed my body jewelry in the past, but I was interested in getting a microdermal piercing on my chest. I have spoken to a piercer at a tattoo shop and she told me the material for the piercing is made up of surgical steel. I'm wondering since half of the piercing is set in the skin and unable to be removed would I be able to still get an MRI? I would like to get this piercing but I don't want it to interfere with the MRI, come out painfully while I'm getting the MRI, or get it and then have to get it removed. I also have Kaiser, so I don't know if that helps. Thank you for your time and I look forward to hearing back. Answer: Inert/noble metals and metal alloys, non-magnetic metals should be safe to have in an MRI. Some examples include copper, silver, gold, titanium, etc. While surgical steel may be safe, it is conceivable that the radiology department will refuse to scan you because it would be very difficult to prove what exactly the metal is really made of. Such a decision would be a common conservative approach to prevent burns/thermal injury. If they did allow an MRI, there remains the possibility that the tattoo will result in artifact which could obscure the MRI image, potentially making interpretation impossible. If future MRI surveillance is critical to monitor your disease and treatment, you may want to hold off on the tattoo. In MS care, there eventually comes a time where new disease activity is unusual and MRI is typically is not needed. A. Scott Nielsen, MD MMSC Kaiser Permanente Here is My Question:
Can you have a "completely normal" neurological exam but still have MS? My neurologist said further diagnostic testing is unnecessary. I'm still worried. Answer: You can certainly have a normal neurological exam and still have multiple sclerosis. There are several ways this could occur: 1. You experienced a syndrome consistent with MS and recovered almost completely; a typical syndrome often associated with a near normal exam even during the attack and often associated with a completely normal exam after recovery is something called a sensory myelitis. This is a syndrome of numbness and tingling in the feet that moves up to the legs often to your trunk over several days, often associated with a tight band sensation around the trunk but nothing else. 2. You’re symptoms and findings may not be amenable to a typical neurological exam. This is common with cognitive symptoms. Hope this helps Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I need some advice. Three years ago I had an attack of numbness, tingling in my legs and tremors in my hands that lasted a month. I saw a neurologist in the ER and they did an MRI of my brain and spine and both were normal. After my attack resolved my muscles became very stiff and still are after 3 years. After the attack last year which was 3 years later I felt my spine up and down like my nervous system was active and felt heat. Then my neck and back felt like I had some type of damage in both areas. My right leg left is weak and I am uncomfortable swallowing. And recently in March my neck on both sides I feel some type of pressure in both my arteries? My right leg is so weak and my right arm feels like a 10 pound weight is on it. I walk with a slight limp now. I saw an MS specialist and my MRI and exam was normal in March but if you watch me in the day you can see my weakness in my right leg. I really believe this is MS. Please help me!! Answer: There are many possible reasons for the type of symptoms you describe in your question. If the MRI of your brain and spine is normal after 3 years, MS is a much less likely diagnosis. Do not become fixated on a particular diagnosis; instead, see your neurologist again with an open mind and ask him to list all the possible causes for your symptoms. If he or she can not figure it out, ask for another opinion. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I was on Avonex for 15 years and Plegridy for 1, is it safe to take a vacation from medications for a month before starting a new drug? Answer: In general a one month off drug is safe, but should be discussed with your clinician as the timing partly depends on which drug someone is switching to – some take longer than others to take effect. 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 Tel 214-645-0555 Here is My Question:
I have not taken any MS meds but recently came up JC positive how is that? Answer: The JC virus (JC stands for John Cunningham) is a ubiquitous virus (meaning it exists throughout the environment,particularly in sewage systems) that most people get exposed to sometime in their life. Exposure is not associated with any specific symptoms, so you will never know if you’ve been exposed without testing. One such test called the JCV antibody test is done in MS patients to determine their risk of developing PML on prolonged Tysabri treatment. This antibody test is positive in about 60 % of people. Many more people have been exposed to the JC virus, but do not make antibodies against the virus even if the virus remains latent in their bodies. There is no known relationship between any disease modifying treatments for MS and JC virus antibody positivity. Therefore, and to answer your question, you do not need to receive any MS treatments to be JCV antibody positive. Furthermore, a positive JCV antibody test does not indicate any disease related to this virus or any problem at all. It only indicates that you are at increased risk of developing a rare brain infection (called PML) if you received prolonged treatment (> 2 years) with Tysabri. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I'm interested in switching from Tecfidera to Ocrevus and have some questions about making the switch. How should I transition off Tecfidera as far as preparation and time frame? Which immunizations need to up to date? If I need to update immunizations such as MMR when is the best time to do this? What other tests and images should be done prior to starting Ocrevus? What factors would make me a poor candidate for the new medication? What premedication is recommended with the Ocrevus infusions to decrease infusion reaction? What is the risk for PML with Ocrevus if I am JC negative and how often should this be rechecked? What tests and follow up imaging should be done to determine whether Ocrevus is working for me? If well tolerated, is Ocrevus something I could use exclusively and long term as a DMT? Thank you for the information. Answer: All very good questions. let’s see if I can handle them in order 1. Transitioning from Tecfidera to Ocrevus should be simple since Tecfidera is short acting. As long as your lymphocyte counts and subsets are near normal, I am not recommending a wash out period between cessation of Tecfidera and starting Ocrevus. If your lymphocytes counts are low, I would recommend waiting until they normalize off of tecfidera before starting Ocrevus 2. No specific immunizations are required before starting Ocrevus. You should be tested for latent or active Hepatitis B and Hepatitis C before starting treatment. Depending on risk factors it is probably important to check for HIV and TB before starting Ocrevus. Lastly older individuals should probably get a shingles vaccine before starting Ocrevus, if their immunity is waning 3. Imaging may help determine if you are a good candidate for Ocrevus; Ideal candidates for Ocrevus include patients with active relapsing MS (relapses and new MRI activity in the past year) with significant risk factors for disease progression or progressive MS patients under the age of 55 who are still ambulating, particularly if their rate of worsening is rapid and there has been evidence of active inflammation on MR imaging. People over the age of 55 with very slowly progressive MS or and patients with severe disability from MS (wheelchair bound with significant loss of independence or worse), especially if at risk for pulmonary infections or other frequent infections, may not be the best candidates. Therapeutic decisions in these patients require individual evaluation. 4. Pre-medications and infusion instructions are in the package insert and known by the infusion center personnel who administer infusions 5. It is always best to monitor responses to treatment with quantitative performance measures and serial quantitative MRI imaging 6. Ocrevus is infused only as a mono-therapy (stand alone treatment ) every 6 months. Some physicians administer at different intervals depending on the circumstances. Some physicians will use Ocrevus as an induction therapy (2 treatments at onset separated by 2 weeks) followed by maintenance therapy with another disease modifying therapy. You would need to discuss your particular circumstances with an MS specialist and possibly seek several opinions Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
My first attack was 2012, pins/needles, numbness, altered sensations, muscle cramps, fatigue. MRI showed multiple lesions but CSF oligoclonal bands -ve and VEPs -ve. Because attack lasted so long, was also tested for lyme, CADASIL and MERRF? 2017 it is back with all old symptoms plus brief (30min) paralysis in arm, shaky legs and leg jerking. LP was bad experience with severe headache and vomiting for 4 days whenever I tried to get up, do NOT want it repeated! Do these bands show up later, is 5yrs long enough? Will a new lesion on brain MRI be sufficient for diagnosis without LP again? Thanks Answer: A definite diagnosis of MS requires characteristic syndromes (not just symptoms) and characteristic findings on examination supported by MRI findings and sometimes CSF findings; Over 98 % of definite MS cases have characteristic MRI findings and over 90 % have characteristic CSF findings. Characteristic new lesions on MRI in the correct clinical setting supports the diagnosis. CSF findings may be negative at onset but usually positive with continued disease activity over 5 years. Headaches after spinal taps (also called lumbar punctures) can be avoided if the doctor uses a small (22-25 gauge), atraumatic spinal needle . Unfortunately few doctors have learned how to use these special needles. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego |
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.
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