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Here is My Question:
I’ve had optic neuritis related to my MS since 1987, stable MS. Am I a candidate for LASIK surgery? Answer: If you have had optic neuritis due to MS you can still get LASIK surgery. You will need to see a corneal specialist who does LASIK surgery to see if it is an appropriate procedure for you to have. Benjamin Osborne, MD Director, Neuromyelitis Optica (NMO), Neuro-Ophthalmology Clinics and MS/Neuro-immunology Fellowship Director Associate Director of the NIH/Georgetown Neurology Residency Program Medstar Georgetown University Hospital #msandlasik #lasiksurgeryandms #multiplesclerosis #MS
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Here is My Question:
I have a question having to do with taking vitamins and/or supplements to boost the immune system while on Rituximab for MS. Would it be recommended to take vitamins/supplements and if so what should it be and at what dosage? In addition, how compromised is my immune system due to the Rituximab infusions? Answer: There is little evidence to generally support vitamin supplementation for people with MS other than supplementation with vitamin D. Any further supplementation recommendations are based on actual or potential risks of vitamin deficiency. For instance, people who have undergone partial gastrectomy's should supplement with vitamin B12 and copper and people who are vegan or vegetarian may require additional B vitamin and mineral supplementation . Similarly, people with conditions likely related to vitamin or mineral deficiencies should be thoroughly evaluated and receive supplements as appropriate Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
I have been to several doctors and also to an MS specialist who is still saying that my spots are suspicious of MS and that they are not active and old!! I have been having symptoms and the symptoms are getting worse week to week and having new symptoms that I just feel are pointless to tell her because I’m tired of her telling me that my lumbar puncture was equivocal for MS but was not within normal range either?? I still don’t understand what she means?? All my blood work is inconclusive except my C-reactive protein is elevated and my IGg index level was 0.70 in my CSF. I’m having a lot of issues with my right side and it all started with my left eye 6 years ago. I had an EMG yesterday that was normal except there was decreased activation of the right tibialis anterior muscle (not reduced recruitment). The doctor suspected this is related to pain, as I did have pain with activation of this muscle, but decreased activation can also be seen with central nervous system disorders. I never told this doctor I had a Nervous System Disorder?? Every doctor I see that reads my report and look at my scans say do I have MS? I reply “NO”, that’s what I have been told, well what are these lesions?? I have no history of strokes, heart problems, alcohol, drug abuse etc!! I’m a 46 year old mother of two that has been trying to figure this out and get the right answers!! It’s not a B12 deficiency, yes I’m an anemic and have potassium issues but take care of these issues. I have been Vitamin D deficient for a long time, but no one has test me for this not once. I would like to send a picture of my lesions to see what others think??!! This has been so stressful ! Thanks Answer: Thank you so much for telling us your story. I can feel your frustration. Let me try to explain. In medicine there are many problems that can cause frustration among both patients and their physicians. The first is disorders without a diagnostic test and highly variable presentations and courses. Top of the list are disorders like MS or Lupus. These disorders rely instead on a set of clinical criteria for a diagnosis that are never perfect and are often applied variably. For those who fail to meet the clinical requirements for a diagnosis of MS, it is imperative that their physicians explain what is going on and help them manage their symptoms. The patient must first understand that receiving a diagnosis will not necessarily lead to a treatment that alleviates their symptoms or even prevents worsening of their condition over time. In most cases failing to meet the diagnostic criteria for MS after 6 years tends to be a good thing; usually, the person either has a benign form of the disease or another problem altogether. What you need is a good neurologist who will take the time to explain why they think you do or do not have MS and is also willing to help you manage your symptoms. This can be hard but ask around I am sure you will find a doctor (perhaps not even an MS specialist) who is willing to help you. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
I'm a 70 y.o. female, diagnosed with MS in my 40's. Avonex stopped d/t side effects. Amazing response to Tysabri but became JC positive so switched to Copaxone. Anaphylaxis so started Aubagio. Dropped WBC and lymphocytes so stopped. Decided no more DMT. IgG also low so started IVIG with improvement of various issues Now on IVIG every 5 weeks and maintaining. I need to get a Shingrix shot but am concerned about interaction with IVIG. This is from the CDC site: "Patients who have quantitative B-cell deficiencies and are receiving immunoglobulin therapy should not receive either non-live or live vaccines while receiving the immunoglobulin therapy because of concerns about effectiveness of the vaccines". They also state in another place to wait between the two drugs, I think it was six months but can't find that source. I know I need the Shingrix, I just don't want to decrease its effect by dosing it incorrectly. The MD's all say it doesn't matter but that doesn't seem to be true. Does anyone on this site know ? Thank you. Answer: The issue you raise concerns the effectiveness of vaccination in the setting of therapy induced immune depletion or immune modulation. This is difficult to predict based on cell counts and impossible to measure when one is receiving immunoglobulin infusions. Let me explain. Vaccination generates both T cell and B cell immune memory, but we usually only measure the humoral immune response to the vaccine. Humoral immunity is referring to the measurement of antibodies that detect some component of the virus used in the vaccination. People who have received B cell depleting therapies (e.g., rituximab, ocrelizumab etc.) often have blunted, resting state immunoglobulin levels against the virus when tests are done to determine if they have adequate immunity post vaccination. These tests do not measure the cell mediated immunity (T cell responses) that is critical for eradicating intracellular viruses during infection, nor do they measure the prompt ability of your body to mount an antibody response following virus exposure. This later ability is achieved by long lived memory B cells and plasma cells. Immunoglobulin therapy has complicated effects, but for the purposes of this discussion, this therapy will make it difficult to detect your own antibodies (which are also immunoglobulins) produced by vaccination. Because of these difficulties we use approximations to determine when to get vaccines when receiving these therapies for MS or another condition. In the case of B cell depleting therapies, you definitely want to wait until the therapy is out of your system before getting vaccinated. In the case of Ocrelizumab and the rest of the high dose infusions that deplete B cells, this means waiting at least 3 months to get vaccinated after an infusion. Some argue to wait 6 months after an infusion to allow for some repletion of naive B cells. Clearly the longer you wait, the better the chance for an improved immune response with vaccination, but this must be balanced against the need for seasonal or yearly vaccine protection. You could see a doctor who specializes in allergy and immunology to determine your vaccination response to make sure you have protection. While it is harder to detect T cell responses to a vaccine because of the lack of commercial assays, you can determine if your body is able to mount a prompt antibody response post vaccination by simply giving a booster injection. People with good primary immunity will quickly generate a lot of detectable antibodies after a booster, whereas this response is delayed in people who have not generated immunity. I hope this helps. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
I am having peripheral neuropathy on my both feet and having pins and needles pain always on both my feet. I am taking Cymbalta 50 mg and pregablin 75 mg daily. There is not much relief. Can you suggest any good pain relief medication. Thanks Answer: You are taking low doses of pregabalin, so I would recommend asking your doctor if the dose can be increased gradually. If you require doses that make you sleepy in order to control the pain, make sure you only take these doses in the evening before bedtime. Other options are available but start with this recommendation. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
Are MS patients able to take pheromone for weight loss? Answer: I am not aware of Pheromones for weight loss. I suspect-based on its name-that this is a chemical scent advertised by its manufacturer as a means to reduce appetite and does not require FDA approval. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
What is PML? Answer: PML stands for Progressive Multifocal Leukoencephalopathy. This is viral infection of the brain caused by a mutated, "neurotropic" version of a common virus called the JC virus or Human Polyomavirus 2. Many if not most people are exposed to this virus in life, and it tends to remain dormant in your body without causing any initial or subsequent symptoms or disease. Under certain conditions of immunosuppression, a mutated version of the virus can proliferate and infect the brain causing PML. This is very difficult to treat unless the condition is detected prior to symptom onset (usually an MRI scan) and only if it is possible to reverse the immunosuppression rapidly. PML is most commonly observed in people with HIV and immunosuppression before they start highly active retroviral therapy. The emergence of PML in some individuals treated with Natalizumab (Tysabri), a therapy not considered a broad immunosuppressant, taught us a lot about PML prevention. Because of this knowledge there has been a dramatic reduction in cases of PML in the United States since 2012. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #PML #JCvirus #MS #multiplesclerosis Here is my Question:
First, thank you for your continued support and advice, I've learned so much from your Virtual MS Center. On your blog post, Is there information on the long-term impact of B cell depletion therapies (whether treating MS or otherwise)?, I wanted to ask if there is yet a way to determine whether the cells which return during the bone marrow repletion process are less autoreactive and/or better regulated? I'm hoping you will say yes, but I suspect you'll say no, not yet anyway. Another question: in general, if CD19 is still zero 6 months after Ocrevus infusion, is it safe to postpone the next infusion until B cells have started to repopulate? Answer: You are correct. At present we have no validated way to determine if the differentiated B cells which return post repletion are less autoreactive or, to reverse the question, when they can become less regulated and more autoreactive. We can look at the clonal size of certain autoreactive cells, but this still only tells us about structure and this information has not been associated with measures of actual MS disease activity. Can you postpone an Ocrevus infusion if CD19+ B cells are undetectable? You actually asked if it is "safe" to postpone infusions, but I am not sure what that means. The risks of postponing infusions in a relapsing or progressive MS patient are small. The real question is how long can you postpone infusions? We really do not know the answer to this question, but there you can ask how long is it safe to continue infusions every 6 months. This answer will depend on many factors including age, prior treatments, comorbid conditions, level of disability and how long you've been on Ocrevus or another anti-CD20 agent. Certainly, if you have an increased risk of infection or demonstrate increased infections on treatment or if your IgG level drops too much, then the risks may be considered too high. These are all individual decisions you must make with a clinician you trust who knows your condition and your goals of therapy. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
When choosing an infusion, are there any significant risks or benefits over selecting Tysabri verses Rituximab? Answer: Interesting question Tysabri is an adhesion molecule inhibitor that reversible interferes with immune trafficking in the brain, thus decreasing the potential for any new inflammatory lesion formation or relapses Rituximab and the other anti-CD20 agents are selective immune depleting agents with more sustained and in some cases long term effects on immune suppression. This theoretically has more long-term risk In practice they are both relatively safe compared to their remarkable benefits as long as you follow the rules for safe administration
Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #MS #multiplesclerosis #Tysabri #Rituxumab Here is My Question:
I was JCV negative until this month and my index is 3.49. My doctor doesn’t seem as concerned as I am. I am really scared. Isn’t this considered extremely high? Answer: A JCV index this high in a person on Tysabri increases the risk of developing PML in the future but should not be a cause for immediate concern. Specifically, this DOES NOT MEAN you have PML or will get PML. It does mean your future risk of PML may be as high as 3 % after 5 years of treatment. This is considered high for most medical or surgical treatments. There is a specific protocol we follow to mitigate the risk of PML when the JCV index increases to high levels while on treatment.
Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #MS #multiplesclerosi #JCVindex #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. Here is My Question: What does this mean? "There is a nonspecific T2/FLAIR hyperintese focus within the subcortical white matter of inferior right temporal lobe (7/20)" Answer: Excellent Question What is a "non-specific T2/FLAIR hyperintense focus" on an MRI scan? Other descriptions which mean the same thing include, "non-specific white matter lesion" or "non-specific T2 hyperintensity". Some radiologists will push the appropriate limits on this description and use the term, "microvascular ischemic changes", although this is not an appropriate description since it implies a diagnosis that is often not based on the facts. Remember, a white spot on a T2/FLAIR imaging sequence does not mean demyelination. White spots essentially represent areas of altered interaction of water with the underlying tissue or replacement of tissue with essentially water. There are many causes, including primary or inflammatory demyelination. When we say non-specific T2/FLAIR hyperintense focus, we are referring to signal alterations within the tissue (basically white spots on the typical image viewed by your doctor) that carry no diagnostic specificity. The possible causes of white spots - including normal things like aging - are numerous and often depend on your age and other medical conditions, as well as their location, size, and appearance on other imaging sequences. When the "white spots" have the location, shape, size, and characteristics on other imaging sequences that are more specific for MS, it is appropriate for the radiologist to raise this possibility, but the radiologist cannot diagnose MS. Unfortunately, all too often the report says something like the following: nonspecific white matter lesions consistent with microvascular ischemic changes, migraine or demyelinating disease (MS). This is unfortunate since non-specific white matter changes require expert neurological evaluation to determine if any of these possibilities are correct. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #MS #multiplesclerosis #MRI |
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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