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Here is My Question:
I was reading a short article in Neurology Today about a possible "passive vaccine" for PML. Could this allow people who have had to stop Tysabri due to a positive JCV? Tysabri was the best drug for me, but my JCV level kept going up to a point that my neurology team said no more. Answer: You are correct. This is a very exciting area of researcher that may, if validated, allow us to develop better techniques for both identifying a persons risk of developing PML and preventing PML in the future Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Which compromises the immune system more? Copaxone or Aubagio? Answer: Theoretically, Aubagio would have a greater effect on the immune system although evidence of clinically significant immunosupression is lacking for both Aubagio and Copaxone. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Is there a protocol for testing for JCV virus while on Rituxan? Answer: No there is no protocol for testing JCV antibody levels on any treatment other than Tysabri Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
My 25 year old daughter was recently diagnosed with MS. She now has to decide which drug to start. She is very lucky as this far has no physical symptoms but does have 3 lesions in the white matter. Dr has diagnosed very mild and slow progression ( had 1 older lesion 18 months ago and now has 3 while on no meds). Suggestions would be great!! Not much out there on the new tecfidera Answer: It sounds like your daughter has many options based on the information you provided. I assume she is functioning normally with minimal if any symptoms. First of all, she should be on a DMT based on her continued disease activity. Please be careful with the terms you use. You question suggests that the 2 new MRI lesions are signs of “progression”. We consider new MRI lesions and relapses as signs of “activity” not “progression”. True progression means that an individual is symptomatically and functionally getting worse on a continual basis. It usually takes many years for any evidence of symptomatic Progression to appear, if ever. Now back to your question. Virtually any disease modifying therapy (DMT) would be acceptable in this circumstance. Since she is young and her disease has exhibited minimal activity, I would suggest the initial use of DMTs none to have a good long term safety profile as long as they are well tolerated. The usual choices in this circumstance would be glatiramer acetate (either the brand copaxone or generic Glatopa) or one of the beta interferons. Glatiramer acetate is administered subcutaneously either daily or 3 days a week with notable injection site discomfort and reactions. Among the interferons, Plegridy and Avonex are great choices because of the less frequent administration (every 2 weeks and every week, respectively). Plegridy has skin reactions (subcutaneous injection ) and potential flu like side effects whereas Avonex primary has flu like side effects. In my experience about 15 to 20 % of people are not able to tolerate either glatirmer acetate or an inteferon and should be switched to another DMT. These are the DMTs I generally recommend for people with MS like your daughter. Among the oral DMTs, Aubagio would be a good first choice. There have been few risks with this drug and it is well tolerated. Less than 10 % of people experience mild hair thinning that stops after about 6 months. You must get lab work to monitor liver function and must avoid pregnancy on this drug. If she decides to get pregnant or has any problems on this drug, it is easily to flush it out of her system quickly. Tecfidera is also not a bad first choice although side effects are often more noticeable in the first few months, it must be taken twice a day and there have been reports of very rare serious infections that require her to be monitored. Gilenya is usually well tolerated in younger people if there no heart problems and no history of diabetes. Generally, insurance companies tend to be more restrictive in the use of oral agents in early mild cases that have not tried injectible DMTs, so these may be more difficult to get approved at this point in time. I probably would not consider any other DMTs at this time given her current circumstances but other agents could be used depending on her future course and response to these potential treatment options. As always, speak with your doctor about this information. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
Can Plegridy damage your heart muscle? Answer: Plegridy, like the other interferon-beta disease modifying therapies, are rarely associated with cardiomyopathy (weakening of the heart muscle). Symptoms of cardiomyopathy can be exertional fatigue, difficulty breathing, swelling (especially the legs), etc. A. Scott Nielsen, MD MMSc Neurologist and MS Specialist at Kaiser Permanente #Plegridy Here is My Question:
I have been diagnosed as inactive MS although I have had it for 20 yrs the neurologist told me due to old lessions. With me it started with tension headaches plus migraines and I've always had health issues.When I asked my new neurologist is it still classed as inactive, he told me 'no not with all your symptoms but as stable.' One year ago there was no activity on my MRI. I feel it's RRMS due to all my symptoms and having it for many years, although diagnosed in 2012. I am no expert but I am confused about 'stable'? Confused?? Answer: Dear Confused, “Stable" means there is no evidence of relapses, disability progression or MRI activity (new or enlargingT2 lesions or enhancing lesions) over a certain interval, usually a year. Longer intervals of stability (5-10 years) are far more meaningful. Another term used to described this kind of stability is, “No evidence of disease activity.” Even the most stable people with MS can experience persistent or intermittent symptoms related to their MS. These symptoms may include fatigue, burning or tingling sensations, and mental fogginess. It takes considerable skill and experience for a physician to correctly attribute these symptoms to MS or to another issue (e.g. medications, depression, sleep disorder etc). The correct attribution of your ongoing symptoms and problems is essential to the process of evaluation and management. You need to ask your physician: 1. "What is the cause of my top three symptoms that interfere with my life?” 2. “What can we do to better manage these symptoms?” I underlined “we” since effective solutions often involve people with MS taking better control of certain aspects of their life. This may include a better diet, more regular exercise, sleeping better, managing stress better or working with a therapist to better adjust to the problems interfering with your life. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego After the interview about healing light guided imagery (HLGI) was posted on our health and wellness page, (you can listen to the interview below or read the summary...Summary of Interview), Paula Marie Jackson (who is researching HLGI) received feedback about the cost of the therapy, and is now subsidizing the rate based on your feedback. The cost has now been cut in half, and now costs $700 total for the 10 sessions. If you would like to sign up for this therapy, you can visit http://www.guidedimagerypro.com/ 
Here is My Question:
I believe I have had the disease for 2 years, but it became clear to me only 4 months ago. My question is for an expert. I have been experiencing the following symptoms non stop since the beginning of winter: tingling all over my body, aching & stiff joints, muscle twitches and spasms, pain all over my body in fingers and legs, left calf cramp, stabbing pains, cognitive issues a constant buzzing sensation in my ears, vertigo, chronic visual impairment,painful lower back, burning sensations. Now I have been to a neurologist and of course I got treated like I didn't have MS. I had an MRi done with and without contrast and also a spinal MRI without contrast. No lesions showed up HOWEVER just before I was due to get my MRi with contraat I was so fed up with the pain and symptoms that I took some oral prednisolone..I actually felt it working in an area of my brain and I believe it reduced some inflammation there. I think this may have altered my MRI with contrast results. So here I am still enduring these symptoms non stop and I have no proof of diagnosis, I know I need a treatment ASAP but I can't get one. Can anyone give me some advice on what to do next?? I am seriously contemplating suicide because of this, I feel pain everyday and have not been able to function for 4 months straight! Is there any other sort of testing that I should push for?? Thank you Jessica from Australia Answer: Dear Jessica, There are many causes for the symptoms you mention besides MS. It is important to find a doctor who tells you what you have, not what you do not have. The first thing to push for is an explanation for your symptoms. This will in turn lead to an appropriate treatment. If necessary, enlist the help of your primary care doctor to have a direct conversation with the neurologist regarding the differential diagnosis and management of your condition. By the way, oral prednisolone will not substantially alter the appearance of your MRI scan if you have MS. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego #multiplesclerosis #msdiagnosis Here is My Question:
I have a question, why does pain cause nausea? I have had for a number of years now intermittent, excrutiating left eye pain. I never know when it is coming or how long it will last, but often it get so bad I end up throwing up. I can usually sleep and it will be either more tolerable or even gone. My vision is not effected when this happens and I haven't had optic neuritis. Answer: It is difficult to explain nausea associated with eye pain without doing a detailed eye exam. However a common cause of eye pain that may be associated with nausea and vomiting is migraine headaches. Sometimes the pain from a migraine is localized to the eye but is not coming directly from the eye itself; rather the brain is perceiving pain from the eye but it is all due to a severe migraine headache. You would need to see an ophthalmologist to make sure however there is no eye problem causing the pain and nausea (such as intermittent angle closure glaucoma, which is a much less common disease compared to migraines). Benjamin J. Osborne, MD Department of Neurology MedStar Georgetown University Hospital. Dr. Osborne is board certified in neurology, with concentrations in neuro-opthalmology and multiple sclerosis. Question:
Hi I have been taking Tecfidera since January 2015. I have noticed that my lymphocytes have dropped to .03 and when I asked my neuro about PML she just tells me there is nothing to worry about. Should I stop taking the Tecfidera? Answer: A lymphocyte drop to 0.03 on Tecfidera would be very serious if it continues. I suspect you are reading it wrong because even a drop to 0.3 would be serious. Please make sure you are referring to the absolute lymphocyte count and have another talk with your neurologist. All authorities, even the most conservative, recommend stopping Tecfidera for lymphocyte counts lower than 0.5 lasting at least 6 months Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
After conversations with my neurologists and doing a little reading (always dangerous) I'm trying to decide what are the serous risks of Lemtrada. I'm 13 years with ms and several family members passed due to complications of MS. I know you don't know my case, but I'd really like to quit the treatment I'm currently on. What does Lemtrada do and is there long term data? Answer: Dr Coles group in Cambridge has followed 87 patients for up to 12 years after Lemtrada (Alemtuzumab) treatment was started. The biggest risk is the development of autoimmunity. 50% of patients developed autoimmunity mostly involving the thyroid (hyper or hypothyroid). Additional autoimmune conditions include idiopathic thrombocytopenic purpura (ITP) and autoimmune glomerulonephritis and autoimmune skin disease. All of these conditions are treatable. The risk of infections is highest shortly after treatment. The long term risk of unusual infections or malignancies is less clear. Dr Coles also reported on the remarkable long term efficacy of treatment in these patients with only 4 developing progressive MS. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
Is there any information about the lowest JCV Index level that has been reported in someone who has developed PML? Answer: I am not aware of this information since we get a range of index values. No one with an index below 0.6 had developed PML the last I heard. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I am on infusion #81 of Tysabri. I am JCV Positive and have always had a low index level. I just had my highest index level come back at .67, I know this is still relatively low but I am a worrier and have had prior IS treatment with Novantrone and Methotrexate and I know that increases my risk of PML. I can't find any answers about how many people have developed PML at these lower index levels, do you have any information about that? Is there any information about the LOWEST index rate in someone who has gotten PML? Answer: Risk of PML in people who have previously been treated with immunosuppressants, especially Novantrone, is determined solely by the presence of absence of JCV antibodies, not the index value. Your risk of PML would be consider about 1 in 100 or even slightly greater than this risk, because even though you are low titer positive, you were previously treated with Novantrone. Many individuals in your circumstance go on an alternate dosing schedule (infusions every 2 months) and get brief MRI scans every 4 months to detect early PML if this should happen. This has been an effective way to decrease the risk of PML further although results on this protocol are only preliminary. If you do not go on an alternate dosing schedule it may be wise to stop Tysabri and start another highly active therapy immediately (usually Rituximab or Gilenya), but as always, discuss this information with your physician. Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego 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. Question: My neurologist does not believe in doing MRIs unless "something changes." Two recent bouts of vertigo prompted him to order my first MRI since diagnosis 14 years ago. I’m awaiting the results, but prior to the test, he suggested that I might be transitioning to secondary-progressive MS and that - given my age (55) and duration of disease (20-25 years from commencement of symptoms) - I could consider discontinuing my Copaxone treatment. This is obviously a very big decision for me, and I want to be sure that it’s well-grounded. In the absence of regular MRIs, what evidence should I be looking for to substantiate this transition? What new MRI findings and other clinical observations would point to an SPMS diagnosis? Should my age be a factor in making the decision to discontinue treatment? What other questions should I be asking my neurologist? And is it fair to ask for a second opinion? Answer: We prefer now to characterize MS as Relapsing or Progressive. This is entirely determined by clinical features. Relapsing patients have periodic, often rare relapses, with little if any continuous worsening of their condition between relapses that can be measured. Progressive patients slowly worsen over periods in excess of 6 months in a way that we can measure in clinic. Progressive patients may also experience rare relapses (see below for activity definition).  Once we decide if a person is relapsing or progressive, we determine their activity over a certain interval, such as a year. Active MS means you’ve experienced a verified relapse or a definite new T2 (white spot) or enhancing lesion on MRI. We tend to use disease-modifying therapies (DMTs) in those patients indicated by the X in the boxes of the above table. Those with long standing progressive disease without any activity do not respond to any of our current therapies.
Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego  Question:
My sex life has gone downhill since I've been diagnosed with MS. I feel badly for my husband and worry that he might start an affair because I just am not very into sex anymore. Do others have this problem and do they think it is due to having MS? Answer: There are many reasons your sex life can go “downhill” after a diagnosis of MS. This is true for men and women. I will give you several reasons and then suggest that you see someone who specializes in female sexuality. 1. Medications especially antidepressants (think Prozac like drugs) and sedating medications 2. Depression and anxiety 3. Fatigue and lack of energy 4. Decreased vaginal and clitoral sensation 5. Decreased lubrication There is never one solution and often education and counseling for both members of a couple are required to get improvements. Good Luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego  Question:
Since I was diagnosed with MS I have been up to my eyeballs in paperwork. I am on Medicare and it is just crazy how much work is involved to get the care I need and from what others with MS say it is no picnic with Obamacare or any other type of plan. Is there any group or resource that can help navigate this crazy healthcare system? --frustrated in Dallas TX Answer: Great question with no easy answer. You may want to start by consulting with the UT Southwestern MS Center in Dallas. You may also benefit from reading the following primer on Medicare from the Kaiser Foundation. This will give you a better idea of the services available to you through medicare. Lastly, you should contact the insurance company administering your medicare plan for information and support. http://kff.org/report-section/a-primer-on-medicare-introduction/ Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I was diagnosed with RRMS 10 years ago. My first flare was 12 years ago. All previous flares and symptoms (except fatigue) seemed myelopathic. I have been on Avonex (18 mos), Tysabri (6yrs), and Tecfidera (2yrs). A year ago I stopped taking DMTs mostly due to apathy but my neuro OK'd this because MRI has been stable except for evolution of small lesions into small black holes. Recently I developed right eye pain which was increased with eye movement. Pain is not severe but dull ache "behind" the eye. Right upper quadrant is a little blurry but no noticeable vision change otherwise. My ophthalmologist says it is mild optic neuritis and that no treatment is needed. This is fine with me since steroids do NOT agree with me. My questions are first, is it not unusual to develop my first episode of optic neuritis at this point? And second, should I go back on Tecfidera? Answer: Since you are not currently on treatment, it is not unusual to have a relapse 12 years into your course of MS. While optic neuritis is a common first attack in multiple sclerosis, it can occur at any time during the relapse remitting phase of the disease. Over time, about 75% of patients with MS will have some type of visual problem (optic neuritis, double vision, nystagmus, etc.). As to whether you should go back on Tecfidera, that is something you need to discuss with your neurologist. I would recommend you start treatment with some immunomodulatry therapy as you are still having relapses; whether it should be Tecfidera or another medication is something you and your neurologist can discuss. Benjamin Osborne, MD Associate Professor Departments of Neurology and Ophthalmology Georgetown University Hospital Question:
Is it quite common people with MS are slow receiving information? Why does the brain work so slow and other information gets soaked in fast? Often frustrating my husband as he needs to explain things again.Yes I have lesions on my brain. Why do these lesions except some information and others not at all? Answer: Slowing of motor and cognitive responses are primary deficits in MS patients. Slowing of information processing speed does not directly lead to errors in learning and memory encoding, but makes these errors more common in certain circumstances. These circumstances include complex or unfamiliar information or information presented in a context which is more difficult for you to handle. These difficulty contexts could be visual or verbal. MS patients will also find it more difficult to remember things if presented with distractions. These are the main reasons you can recall certain things easily while other things are almost impossible to recall accurately. To circumvent these problems with memory try the following: 1. Determine which format is best for you to learn information (i.e. verbally, visually) 2. Eliminate distractions when trying to learn anything new or have an important conversation (music and TV off and no other conversations or noise in the room) 3. Immediately, write out the important information to learn . you must do this yourself and it helps to rewrite the information more clearly if your notes are haphazard. Someone else's notes or lists will not help you remember things. 4. Do not try to learn important things when fatigued (e.g. early afternoon). Morning is a better time You can also read our symptom page on cognition that has some more tips and information at http://www.healthcarejourney.com/cognitive-dysfunction.html Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I was diagnosed with MS two years ago. Recently I've had trouble swallowing. Is my MS causing this and what can I do about it? Answer:It is unusual to experience problems swallowing 2 years after the diagnosis of MS unless your problems went undiagnosed for many years. Other problems could be responsible for your swallowing problems and you should be re-evaluated by your MS doctor. Here is a previous blog written by Lori Ann Kostich M.S. CCC-SLP from the Mandell Center for MS about dysphagia and swallowing which includes exercises and tips to manage it. READ MORE |
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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