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I work outside 4 hours a day. I am required to wear a mask at all times. When I am done I have a bad headache and I feel weak (my legs are like noodles). Does wearing the mask effect my MS? Answer: Wearing a mask should have no effect on your MS. Check the air quality in your area using the AirNow app from the EPA (download from the app store). Poor air quality from high ozone or particles could be contributing. You should also contact your primary care physician about these symptoms Good luck Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego
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My daughter's MRI says the T2 and flair hyper intense lesions are 15-20 in the supratentorial white matter suspicious for demyelination. Does this mean it is likely MS? She is only 15. Answer: There are many causes of T2/FLAIR hyperintense lesions in the supratentorial white matter of people at any age. The differential diagnosis depends on the medical history and symptoms, exam findings, family medical history and, to a great extent, on the age of the individual. The presence of T2/FLAIR hyperintense lesions is by no means diagnostic of MS by itself. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
Hi, I will start a laser hair removal next week. I have been taking Gilenya for 8 years. Is there any danger? Thank you! Answer: I know of no contraindication to laser hair removal related to the use of Gilenya Good luck Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
Would Kesimpta be a good alternative to Ocrevus if I'm worried about potentially being exposed to COVID during an infusion? Do you know if I might experience a rebound after discontinuing Ocrevus? Is there an optimal amount of time after stopping Ocrevus before starting Kesimpta? And lastly, does the fact that Kesimpta has to be administered every month vs every 6 months mean my immune response might come back more quickly if I get COVID and stop taking it while I fight the disease? Many thanks! Answer: Very good questions about switching from Ocrevus to ofatumumab (Kemsimta). Here are my responses
Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
How come I get cuts after my bruises goes away? Answer: Questions regarding cuts and bruises should be directed to your primary care physician since there are many potential explanations most of which have no relationship to your multiple sclerosis. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question: Does the number of oligoclonal bands found in CSF determine the prognosis of your MS? What is an”median” number of bands found in someone with MS? My LP revealed 14 bands and I wondered how this relates to my MS diagnosis and prognosis? Answer: The term "CSF (Cerebrospinal Fluid) Oligoclonal bands", or sometimes shortened to Oligoclonal bands, refers to the presence of several unique immunoglobulins (also called antibodies) in the spinal fluid that cannot be identified in a matched plasma sample. This is a qualitative test that requires some experience for the identification of the individual band number in the sample. The proteins within the body fluid being sampled (plasma or CSF or whatever) are separated on an agarose gel by their size and electrophoretic properties (remember, proteins have an electric charge) and stained for visualization. The staining process reveals the migratory location of the various proteins on the gel for visualization (see below). Counting individual bands can be difficult if they are faint or overlap with other protein bands, but various techniques have been developed over the years to improve the resolution of the assay. The picture that follows (reproduced many times in other publications and online) gives you an idea of the qualitative nature of the assay. The left-hand panel for both the normal and abnormal patient (abnormal referring to the one with multiple sclerosis) is the CSF banding pattern and the right-hand panel on each side is the plasma sample from the same person. It is easy to identify the different staining patterns in the CSF immunoglobulin region from the person with MS compared to the "normal" person without MS (both labeled), but I challenge you to count the number of bands in this region from the CSF sample that are not present in the adjacent plasma sample.  So, this is how the assay is done. What does it mean? The presence of 2 or more CSF oligoclonal bands is a sensitive diagnostic marker for MS in the correct clinical circumstances(positive predictive values of 95 % in some circumstances).This means that CSF oligoclonal bands can be seen in other conditions and cannot be used alone to diagnose MS but is extremely useful and predictive in the right circumstances.
More recent studies suggest that the number of oligoclonal bands is predictor of disease severity. In one study of people with a first attack of MS, the median number of oligoclonal bands at onset was 8 and those individuals with more than 8 oligoclonal bands at onset experienced more disease activity. In another study of people with known MS on DMTs, those with greater than 10 oligoclonal bands experienced a worse prognosis. At present there is no accepted cut off for a number of oligoclonal bands that indicate a worse prognosis. We prefer to use several pieces of information, including the number of CSF oligoclonal bands, to make this assessment. This information may include other biomarkers such as CSF free kappa light chains or serum neurofilament light chain measurements. These are particularly good measures because of their associations with disease activity and severity and the quantitative and sensitive nature of the assays used. We also use demographic features (age and sex), clinical features, responses to prior treatments and MRI measurements to help with prognostication. Hopefully, we will be able to develop a panel of measures in the future that when combined allow us to both prognostic risk of disease activity and response to treatment. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
MS treatment during Breastfeeding Hi! I got pregnant 3 months after my last Ocrevus infusion. I am 13 weeks now and feeling ok without receiving any MS treatment. However, I am aware of the increased risk of relapse after delivery and I'd love to breastfeed if at all possible. Please, do you know of any treatment that could keep me safe without MS attacks during the breastfeeding time? Thanks so much! Answer: Ocrelizumab is a large protein and very little should be detected in breast milk, even shortly after an infusion, as long as you do not receive the ocrelizumab infusion during the first week of breast feeding. The small amount that is found in breast milk will be destroyed by gastric secretions and will not be absorbed by the infant in a biologically active form. This information is based on studies of other large monoclonal protein therapies. To my knowledge no one has measured the amount of Ocrelizumab in breast milk as of this writing. There are anecdotal reports of breastfeeding mothers receiving either Ocrevus or one of the other anti-CD20 monoclonal antibodies with no evidence of harm to the infant. We recommend that patients with MS and their MS specialist assess the risk of relapse post-partum and make a determination of the best time to resume treatment. We hold off on the resumption of treatment until after the mother stops breast feeding, if the mother's disease activity risk factors were low before starting the therapy. If we do hold off on the resumption of disease modifying therapy after the baby is born, we will often pause breastfeeding between 6 and 12 weeks postpartum to repeat imaging studies to reassess the risk of a postpartum relapse before either resuming breastfeeding or ceasing breastfeeding to restart MS treatment. Good luck to you Revere P (Rip) Kinkel, MDProfessor 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. Here is My Question:
Can the MS treatment (medicine) AUBAGIO cause shingles? Answer: Shingles is not a listed risk of treatment with Teriflunomide (Aubagio) for Multiple sclerosis. However, many of the MS DMTs, including Aubagio, can potentially suppress immune responses and increase your risk of unusual infections or reactivation of dormant viruses like varicella, the cause of shingles. This is more common in older patients (> 50), those with prior immunosuppression and those with a lowering of absolute lymphocyte counts on therapy. We encourage our patients to obtain a Shingrix vaccine if they are over the age of 50 and receiving a potentially immunosuppressive therapy. This vaccine is very effective at lowering the risk of shingles. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego If you type in "MS Hug" into the search bar in the top right hand corner of this page, you will find quite a lot on the topic. If you don't find the answer you are looking for, please let us know.
-The HealthCare Journey Team Here is My Question:
Do you have to wash out Betaseron before switching to Ocrevus? Answer: There is no scientific or medical reason to, "wash-out" any interferon beta therapeutic agent (this includes Betaseron, Extavia, Avonex, Rebif or Plegridy) before starting another disease modifying therapy (DMT), unless the interferon is being discontinued because of a lab abnormality or side effect. If the switch is occurring for either of these reasons, it is prudent to wait until the lab abnormality or side effect improves before initiating the new DMT. The necessity of waiting to start a new DMT is usually based on the clinical circumstances and judgement of the treating physician. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
There's a report out that Ocrevus canceled out chicken pox antibodies in someone with RRMS. How does that affect someone with PPMS who would like to get the shingles vaccine Shingrix? Answer: B-cell biologics can lower antibody production levels and can hamper the humoral immune response to vaccination. When b-cells are transiently absent (depleted) after an infusion, vaccines are less effective and should be planned in a timeframe that takes this into account. The exact number of b-cells needed to mount a robust antibody response is of research interest right now. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I am a male age 39, and I'm having a variety of fun symptoms (as my doctor calls them), and I'm now awaiting an EMG exam. I've had a MRI without contrast fluid on brain, upper spine and lower spine without any findings. Was unusally fine for my age group. I've had sensory changes, an odd feeling on half my tongue, and unilateral facial pain/numbness. l've also had a headache with ear pain and pain above my eye socket. Usually it is located on the right, but can suddenly change to the left with no warning, but with an identical pattern. But always one sided. No weakness but left and right side of my body feels different. I also experience muscle twitching with no pattern, for example left bicep twitches for 3-4 seconds, then on my right calf, then on my left little finger. I also experience slight sensation reduction around the body, and no vibration sensation in my right leg (but can sense tapping, rolling, position changes, and touching just not vibrations. What are the chances this could be MS? I'm starting to get real anxious of a potential MS diagnosis. No MS in my family but migraines and idiopathic peripheral neuropathy on my mother's side and diabetes on my father's side.. If this ends up with a MS diagnosis, how is the prognosis for people diagnosed nowadays? Answer: Sorry to hear of the variety of "fun" symptoms. If it is correct that your MRI of the brain and spinal cord is normal, then it is highly unlikely that you have MS. From what you shared, it does make sense to study your peripheral nervous system (that is the EMG/nerve conduction study) since your symptoms could arise from this rather than the central nervous system (which was imaged on the MRI). Although I doubt you have MS based on the information provided, to answer your last question, the treatment of MS has come a long way over the past 2 decades that I've been following MS patients in the clinic. While therapeutics haven't reached the "cure" level yet, we do have highly effective therapies now that in some patients can achieve a state called "no evidence of disease activity" which essentially means a permanent remission status. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I'm under evaluation for MS among other things. One of the things I wonder about is unilateral hypaesthesia and sensation changes that suddenly changes. Is this typical for MS? It can last days/hours on one side the suddenly change to the other side. Answer: Yes, this can be MS among other considerations. Proper application of the McDonald criteria should aid the physician specifically regarding MS. A. Scott Neilsen, MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Could more oral Baclofen make the hip flexor worse rather than better? I raised my Baclofen to 20 mg. three times a day and walking steps is harder than before. Answer: One of the downsides of higher doses of baclofen is an excessive reduction of flexor muscle tone and the perceived leg weakness you describe in your message. This usually means it is time to adjust your daily baclofen dose. Some people with MS who experience this phenomenon on high doses of baclofen taken three times a day benefit from taking small doses more frequently (e.g. 5 to 10 mg every 4 hours while awake) to maintain control of their excessive muscle tone; other people will maintain their usual schedule but take reduced doses. Talk to your MS specialist about the options. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I started Plegridy 5 months ago and have had some strange side effects that I can't find reported anywhere else. I have found my vaginal muscles contracting on injection day...strange sensation. But also have noted over the past few months and on several occasions I have woken to an orgasm (happened last night). Sounds great..but it is rather strange. Are there any reports of these kind of side effects? I am female and in my 40s. Answer: As far as I am aware, this is an unreported symptom related to Plegridy injections. You should report this to the Biogen Drug Safety reporting line (1-866-418-2859). We can only determine if a symptom is a side effect of treatment if enough people with similar experiences report this problem to the manufacturer. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
if my leg hurts is it appropriate to keep exercising? Answer: Whether or not you should exercise when a limb is painful depends a great deal on the cause and severity of the pain . This is often why physical therapists require clearance from a doctor before starting therapy. The potential causes of pain in a limb are really too numerous to give you a useful answer. Please direct this question to your PCP or MS specialist for a response. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
When I get extremely hot, it ooks like I'm looking through very thick fog but when I cool down my vision goes back to normal. Should I be worried and go see a doctor? Answer: What you describe it called Uhtoff's phenomenon. I am assuming you have multiple sclerosis and that you previously had optic neuritis. After someone has had an attack of optic neuritis (and recovered) there can be transient episodes of blurry vision when the core body temperature rises and the vision recovers as the body cools off. This is not another attack of optic neuritis but rather a well described phenomenon (Uhtoff's phenomenon). The rise in body temperature is not causing further or new damage to the optic nerve. Rather the rise in temperature is unmasking the prior damage to the optic nerve which occurred when the optic neuritis happened previously. If you have not seen an ophthalmologist or neuro ophthalmologist recently it is probably a good idea to follow up with one in clinic but it is not urgent. 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 Here is My Question:
Various doctors have suggested I have MS, 3 times over past 17 yrs, due to having most symptoms, no other causes, even MS lesions on my MRI. However, my lumbar puncture was clear a few yrs ago. HLA-B27 positive also. Since lumbar was clear, they said not MS. But fail to be able to give me another Dx. So I'm stuck in limbo with no meds. Answer: Can you have MS with no signs of it in a lumbar puncture? Approximately 5-10% of patients with MS will have normal spinal fluid. The test can be helpful to confirm "dissemination in time" which is part of the McDonald diagnostic criteria for MS (which you can read about on this site). Since your spinal fluid doesn't support that part of the criteria, the other way to confirm "time" is by your history and a careful neurologic examination. Another aspect of the diagnostic criteria is to rule out mimickers of MS. Sometimes, an HLA-B27+ result can indicate Neuro Behcets disease (but only in the appropriate clinical setting and confirmed by the neurologist). In my opinion, it is best to get additional opinions from fellowship trained neurologist in MS (also known as a neuroimmunology fellowship). This training provides additional experience in differentiating mimickers; although, sometimes, the diagnosis is elusive. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Does increased humidity cause dizziness? My vision isn’t blurry right now. I have relapsing remitting MS and have been having dizziness mostly in early part of the day for few days off and on. Temps have been in 80’s with high humidity lately . I have h/o ocular migraine. Answer: Climate and weather related factors can influence symptom s in MS, however given history of migraines, I suggest to consider aggressively treatment migraines as it is a stronger probability that weather is impacting migraines. If not familiar, I suggest to consider using CGRP blockers as a preventive treatment for migraines Augusto Miravalle, MD FAAN Clinical Associate Professor of Neurology Liaison for Neurology, Fort Collins Branch University of Colorado Denver School of Medicine |
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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