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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
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My question:
Does multiple sclerosis cause sleep issues? Answer: Your question is a very common one. Please use the search box in the upper right hand corner of this page to search for all that has been written on this site by our MS specialists about sleep issues. Here is one blog to get you started on reading about sleep and MS. http://www.healthcarejourney.com/sleep-issues.html
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Here is my question:
I recently had an MRI and it showed a lesion on my brain. The neurologist says it might be an early symptom of MS. Is this correct? Answer: The MRI scan alone can not diagnose MS. I'd be cautious about jumping to conclusions. Please see this prior blog about diagnosing MS and the common problem interpreting the significance of abnormal MRI results by a provider that does not have subspecialty training in MS: http://www.healthcarejourney.com/q--a-for-virtual-ms-center/the-diagnosis-of-ms A. Scott Nielsen, MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
How can you control anger if the lesion is on that part of the brain. Answer: My brother in law used to say that anger is extremely useful but requires introspection, discipline and refocusing to apply to positive ends. The first thing you must do with anger is put is aside and contemplate it; not act on it immediately. We do this with kids when we give them a time out or send them to their rooms. This forces them to calm down their emotions and refocus their thoughts and energies. For some people with MS, it can be difficult to refocus and inhibit their initial and subsequent emotional responses to whatever provoked their anger. They need the help and support of those around them, much like a parent provides similar support to a child. 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 secondary progressive MS and I'm doing well so I assume its non active...so my question is if there is a link between spirituality and progression? Could it be that MS being a neurological disorder creates hyper sensitivity in the physical body which forces one to listen to their body and manipulate external factors that stimulate that sensitivity and impact them in a negative way..for example I say I can not talk to so and so if I want to keep walking...so is it fair to say we can manage MS symptoms if we take an energy approach to healing? Or is it because I think my MS is non active actually since I've been diagnosed that I don't struggle with severe symptoms or ones I can't manage. Answer: I’m not sure it is important to contemplate the mechanism of your stability. Meditation will allow you to remain mindful and focused on the positive. It will also make it easier to sustain an active and engaging lifestyle. This as well as a good support network will help you remain resilient against any effects of MS on your life. 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:
Are there studies proving the Tysabri PML “Risk Factor” is reduced by extending dosing intervals to 8 weeks or more? I selfishly ask: I was JC positive when starting Tysabri 8/2006. I had 132 TOTAL infusions 8/2006 to 5/2018 including 2 "Breaks" Break #1 was 7/2008 for 3 months, restarted 10/2008; #2 was 11/2011 for 8 months, restarted 7/2012. Break #2 was originally planned as permanent because 7/2012 LP found JCV antibodies in my CSF. I accepted risks compared to personal benefits from treatment and restarted Tysabri 7/2012. Last LP and CSF test 7/2013 was “normal.” Six month Tysabri protocol MRI’s show little change; symptoms stable and no flare ups. Began 5 week intervals in 2017 and 6 week intervals in 2018. JC titer range .5 to .8 through 1/2018. However “titer risk” increased 5/2018 to 1.25 and 10/2018 to 1.68. With more than 72 months of treatments and titers of 1.25 and 1.68 the “Risk Factor” table* shows PML risk of 1 in 333 and 1 in 100 respectively. SO….. --Are the only tested and reliable risk tables based on frequency of treatments every 4weeks (13x annually) ? --Has Biogen or any trustworthy entity created a “Risk Index” for PML with Tysabri on extended dosing of 6, 8 or greater week intervals? I know risk of PML greater w/Tysabri than Rituxan/Ocrelus.(Lemtrada ruled out).But I’m scared of changing from Tysabri, that’s worked to a new treatment with new risks. Any and all suggestions, comments, references and ideas welcome. Answer: I will refer the author of this question to a research abstract from ACTRIMS meeting earlier this year which addresses risk for PML among JCV antibody POSITIVE patients among standard dosing (4 weeks) and extended dosing (more than 4 weeks but less than 12 weeks): https://actrims.confex.com/actrims/2018/meetingapp.cgi/Paper/3102 The study analyzed Biogen’s TOUCH Program database. Hazard risk for PML among extended dose patients was much lower and statistically significant compared to standard dosing. I am not aware of a separate risk table for extended dosing patients. While this study cannot evaluate the effectiveness of extended dosing on disease activity, this has been reported at numerous scientific conferences including this month at ECTRIMS: https://www.neurologyadvisor.com/ectrims-2018/natalizumab-extended-dosing-schedule-multiple-sclerosis-treatment-efficacy/article/806221/ Even with this welcomed data and the observation that extend dose interval confers lower PML risk without sacrificing disease control, the decision to continue on therapy must be discussed with the treating physician. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Often can't put words for my thoughts. Rather than say what I want to say, I forget what or how to put speak it/the sentence/word. I have trouble mentally to force myself to slow down, doesn't help often..Some call it a brain fart. I just say I'm mental... Answer: Word finding or word fluency difficulty is common in MS and can result in significance pauses in thought and articulation as well as difficulty expressing oneself using proper syntax. Did you have a question about this problem? 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 been on Tecifidera since 9/13 with excellent MS control. Before that I was on Tysabri for almost 7 yrs and Avonex before that. I have always had some GI issues on Tecfidera, tremendous flatulence, intermittent diarrhea and increased reflux but they were manageable and I did not consider them to be show stoppers. But in the past year my reflux has become so bad that I am chronically hoarse to the point where long conversations are difficult and my singing which used to be less affected than speech is impacted. Singing is really important to me. It makes me really happy and has helped a lot in controlling depression that became chronic after I had to stop working as a neonatologist. I also take venlafaxine and have periodic courses of rTMS but singing is what makes me really happy. I have seen an ENT and there is no other vocal pathology and I am on maximal medical management including meds, diet and sleep position. Plus I have lost 40 lbs and counting. In August, after being sick for a month with severe nausea, increased reflux, fatigue and diarrhea so severe that I soiled myself 3 times and my K went down to 2.7. I also lost 10 lbs that I have intentionally not regained. I finally had an abdominal CT that showed mesenteric panniculitis. Symptoms gradually improved without treatment other than IV fluids and temporary oral potassium. But I am still having flares in GI symptoms for 1-3 days at a time that interfere with my ability to be out and about. So I am thinking about switching from Tecfidera. But I have no idea what I would like to switch to. I used to be compulsive about keeping up with the various medications. But there are so many now and I lost interest which was probably a good thing for my life. Even though my MS has been very mild by the usual objective measures I prefer to be on a highly effective med. I don’t mind injections or infusions but interferons are out due to depression issues. I switched from Tysabri because I became JCV+ with a titre of 1.48 after almost 7 years and my disease was mild and inactive. I am 61 yo and my other significant medical problem is asthma requiring Advair for decent control. Can you point me in a direction to research? I do not find my current neurologist helpful beyond prescribing a DM med. He shows no understanding of my issues, priorities and goals especially controlling depression. Sorry this is so long and thanks for your help. Answer: Excellent question To summarize, you are a 61 year old relapsing MS patient with GERD, asthma and depression who's previous treatment included Avonex (worsening depression), Tysabri (low positive JCV index < 1.5) and Tecfidera (severe persistent GI side effects) and you would like another highly effective MS treatment. Options are as follows (of FDA approved agents) 1. Gilenya (an SIP agonist and oral medication) is an option but should be used with caution (meaning pre-start specialty evaluation and good follow-up) because of age (potential cardiac arrhythmia issues) and asthma 2. Ocelizumab or Rituximab (both anti CD20 monoclonal antibodies) are options but require caution at 61 with potential breast cancer risk and less information on long term risks 3. Tysabri is my favored option, since you already know that this is well tolerated and effective based on your prior experience. We now know that administering tysabri with an extended dosing interval of 6 to 8 weeks dramatically lessens the risk of PML, and in practice we have not seen a significant drop in efficacy with these dosing intervals. There is a planned clinical trial about to start that is designed to prove that extending the tysabri dosing interval does not lessen the effectiveness of this treatment. Depending on your location, you could consider participating in this trial for added safety and monitoring. 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 have a question about brain MRIs. Why might there be white lines (look like parentheses) either side of ventricles on brain MRI? Thank you. Answer: Changes on a MRI in MS are most often considered to be demyelination, BUT there are exceptions. Patients can have other causes of a change on MRI. Also, some MRI pictures may be blurry or have artifacts on them that do not represent real change. It is important for a treating neurologist to review the films to help determine what any changes represent. Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Strategic Initiatives Cain Denius Scholar of Mobility Disorders Distinguished Teaching Professor Department of Neurology and Neurotherapeutics Department of Pediatrics UT Southwestern Medical Center Dallas, Texas Here is My Question:
Lesion Location - Superior Frontal Gyrus My last MRI showed foci of T2 and FLAIR hyperintensity found in the superior frontal gyrus. This was done on a 3T MRI. Does this mean they were in the cortex? I’m trying to understand exactly where that is, mostly for curiosities sake. Answer: It is hard to say where the presumed T2 hyperintensity (what you refer to as a “lesion”) is located without reviewing the images. Radiologists are sometimes inexact in their descriptions. If the report says, “superior frontal gyrus” , this could mean the white matter, the gray matter (cortex) or both. 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:
Hello, I am a 50-year old diabetic woman who began Tysabri treatment in 2010. For the past few years I've experienced frequent bouts of bacterial vaginosis. Metronidazole gel initially cured my symptoms but, is now ineffective. Do you have any advice or recommendations? My GYN and I would appreciate the insight. Answer: Bacterial vaginosis is very common and both Natalizumab (Tysabri) and Diabetes increase your risk of this common infection. You may or may not be able to prevent this problems from reoccurring but here are some suggestions: You need to create an acidic environment in the vagina to nurture the growth of lactobacillus and other normal bacterial flora that suppresses the growth of yeast and harmful bacteria. You also need to decrease the amount of glucose in your urine; this glucose in the urine feeds the harmful bacteria and yeast in the vagina that upsets the normal balance of bacteria flora. Lastly, you need to keep the area dry, if possible; any problems with urinary accidents, even small amounts, will further increase the risk of infection. How do you do all of this?
It is not at all clear why Natalizumab (Tysabri) is associated with an increased risk of vaginosis but this seems to be a reproducible finding. If your MS is well controlled on Natalizumab (Tysabri), you may consider extending the interval between infusions to every 8 weeks. This may allow for more recovery time. Many individuals who are JC virus antibody positive increase the interval between infusions, because this change in the dosing interval has been shown to dramatically lower the risk of PML. Most MS specialists have not noticed a significant decrease in the efficacy of Natalizumab (Tysabri), when you increase the dosing interval. In fact a clinical trial is planned to prove that increased dose intervals do not alter the effectiveness of Tysabri Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Differential Diagnosis of MS - How Likely is Microvascular Ischemic Disease for A 35 Year Old?9/21/2018 Here is My Question:
Differential Diagnosis of MS - How Likely is Microvascular Ischemic Disease for A 35 Year Old? My latest MRI report stated: 11 foci of hypertensity (FLAIR) predominately in the subcortical white matter of the cerebrum bilaterally. Of course it goes on to state that nothing abnormal was found on other sequences... The list of differential diagnosis included migraines, demyelinating disease, vasculitis and microvascular ischemic disease. I’ve never had a migraine (ruled out by neuro) and don’t have primary or secondary vasculitis (ruled out by rheumatology twice). My MS Specialist felt my symptoms suggested Multiple Sclerosis. My question is: How likely is microvascular ischemic disease in a patient who is 35 and has no risk factors? No family history of strokes, no personal history of diabetes, normal (to low) blood pressure, normal lab work (for almost anything you can imagine to rule out MS), low stress lifestyle, etc. The MRI report also mentioned that this amount of hyperintensities is not atypical of a patient of my age. I was under the impression that 1 lesion per decade was at the upper limit of normal until the 60’s, then these changes begin to become apparent. Answer: In general, microvascular changes in 35 year olds with no risk factors are rare, but can happen. Sometimes family history contributes, sometimes the changes are not microvascular changes but enlarged perivascular spaces. The key is the interpretation and getting another neurologist or neuroradiologist to review controversial MRIs (ie second opinions) is often a good idea. Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Strategic Initiatives Cain Denius Scholar of Mobility Disorders Distinguished Teaching Professor Department of Neurology and Neurotherapeutics Department of Pediatrics UT Southwestern Medical Center Dallas, Texas Here is My Question:
In 2012 I had an episode of severe vertigo and my eyesight even changed overnight. Then over the years I had weeks here and there when my face would go numb or I had pins and needles here and there. I'm also having short term memory issues. An MRI in 2014 of my brain and neck on a 1.5 T only came back with nonspecific white matter.... then in January of this year my body started going haywire with numb legs, spasms, speech slurring when hot, forgetting what I was doing right in the middle of something, tongue tremors, facial numbness again, zaps along face, zaps around ear, and now burning sensations in legs constantly, leg and arm weakness, internal vibration feelings, twitches etc. I had a spinal tap done and there was no bands but the CSF index was flagged high but just at the mark where it would be flagged. The notes on the CSF panel state that there are reactive lymphocytes and plasma cells present. I am in limbo and need this to stop. My doctor is saying small fiber sensory neuropathy. I just don’t see how! The portion of the CSF index states this provides support for the diagnosis of MS. I did have MRIs this year and there were two active high intensity spots and a few non active spots. Should I seek further diagnosis? The medicine she prescribed Gabapentin or something like that even made my burning sensations worse... Answer: You are certainly experiencing a wide variety of unpleasant symptoms but I could not diagnose either MS or a small fiber neuropathy based on your description. Remember, MRI findings and CSF findings must be interpreted in the context of your age, other medical conditions, symptom history and findings on examination. It takes a good doctor to piece this all together. If CSF findings or MRIs were diagnostic of anything, you really wouldn’t need a neurologist. Perhaps all you need is a second opinion. Why not ask this doctor to send you for a second 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:
Are there any contraindications for receiving Tysabri, Taxol and Herceptin infusions on the same day? It would make it easier on me not to have to travel 45 miles twice in a week. Answer: The answer to this question depends on many different factors. It is probably not a good idea to combine these treatments in general. Infusion reactions can occur with all three medications and it would be difficult to know which drug was causing the reaction. Using taxol and Tysabri together could also increase the risk of serious infections. This is a conversation your neurologist and oncologist need to have with each other. They are the only ones who know your clinical history in enough detail to answer this question thoughtfully 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 going to be starting Rituximab Infusion soon. I have Relapsing MS. Can you explain how this infusion works? Answer: Rituximab is a chimeric monoclonal antibody engineered to bind to and kill any cell in your circulation that has a protein on it’s surface called CD20. CD20 is primarily expressed on the surface of B cells, a subtype of lymphocyte, making this a very selective therapy that leaves the rest of your immune system unaffected. The B cells destroyed by rituximab are thought to be heavily involved in both the development and persistence of the inflammation associated with Multiple Sclerosis. This is the likely reason that Rituximab is so effective in relapsing forms of MS, a stage of the disease where injury to the nervous system is primarily caused by new and persistent inflammation. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Click on the image below to register  Question:
Can MS cause bone pain that lasts for months? Answer: MS doesn’t directly cause bone disease. Bone thinning can be seen as a result of chronic medication use associated with bone loss in addition to immobility and reduction in weight bearing activity. True bone pain should be evaluated through a primary care physician first as MS is not a direct cause for this symptom. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I am 48 years old, and been diagnosed with MS officially for 17 years. I have had no relapses since 2005 when my last child was born. I have been on Copaxone since then as well. It is being recommended due to heavy bleeding that I get a Mirena IUD implant. I have fear about it causing a relapse. The information provided In the literature I can find is insufficient. Can it cause a relapse? Answer: I wouldn’t worry about this IUD causing a relapse. Hormone manipulation used for infertility protocols can precipitate a relapse but that is not related to IUD material/medication. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I'm a working female in my late 30s with RRMS. I am doing ok with it, but it is the secondary stuff I am trying to learn to live with. What is the priority to handle: sleep cycle disturbance or daytime fatigue? They're both negatively affecting one another. I'm dragging myself to bed between 10 and 11pm nightly (can't go any earlier). I am up between 3:30 and 4am for a variety of reasons (not often MS symptom related...I'm a light sleeper), and I can't go back to sleep. Once I'm up, that's it! By mid-day, I'm a walking zombie. I can't function without caffeine around 2 or 3pm. Wash. Rinse. Repeat. I am already on 100mg Amantadine in the morning and 50mg before 1pm, but it hasn't really done much. Sleeping pills make daytime drowsiness so horrible. How can I get more sleep and more energy? Help! Answer: Managing daytime fatigue and sleepiness must begin with a thorough evaluation of altered or disrupted sleep. You can only beat the proverbial, “dead horse” so much with caffeine and stimulants . It sounds like you have longstanding problems as a light sleeper but were able to compensate in the past. Common problems to address include the following:
Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Is there a possibility of having an adverse reaction to the tdaP vaccine while taking Tecfidera?9/3/2018 Question:
Is there a possibility of an adverse reaction to receiving tdaP vaccine while on Tecfidera? Answer: Please read this answer to a similar question someone previously asked: http://www.healthcarejourney.com/q--a-for-virtual-ms-center/is-it-safe-to-take-the-tdap-vaccine-if-you-have-multiple-sclerosis |
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