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Hello! I’m a 39 year old female. In September I began having a whooshing sound in my left ear. Met with an ENT who diagnosed me with Pulsatile Tinnitus and had an ultrasound on my ear and neck. Everything was normal. They did an MRI and found my ear to be fine, but found a lesion on another part of my brain. Told me to schedule an appointment with a neurologist, which I did. Appointment was scheduled 3 months out. Then the week before Christmas, I woke up to my left eye unable to open due to pain. It hurt when I moved my eye. No redness, no swelling. Extremely light sensitive and blurry. Got in to see an eye doctor. Everything looked fine other than my vision was lower than it was. Diagnosed me with optical neuritis. Did the test to check my peripheral vision, and that came back significantly decreased in my left eye. Told me to meet with a neurologist, which I already had scheduled. A few days later, my eye was seeing large blue/green spots. Persisted for about a day. Randomly get headaches behind my left eye down through my neck. My neurology appointment is set for the end of this month. Does this sound like it could be or lead to MS? What steps would be taken next to find out? Thank you so much for your time!! Answer: It sounds like you experienced optic neuritis. The colored (blue/green) spots are called phosphenes and are common with optic neuritis. This is from irritation of the optic nerve and retina by the inflammation. Pulsatile tinnitus is common and rarely caused by vascular malformations or narrowing of the carotid artery. This is probably the reason they did the MRI before you experienced the visual problems I hope your vision improves soon. The neurologist or neuro-ophthalmologists will help you discover what caused your optic neuritis. There are many causes other than Multiple sclerosis. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego #multiplesclerosis #MS #opticneuritis
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I have painful cramps in my left foot that effect my big toe to move in an outward position away from the other toes. How can I alleviate them? Answer: For cramps in the foot do the following:
Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego #MS #multiplesclerosis #footcramps Here is My Question:
Can I take the morning after pill while on Tecfidera? Answer: You can certainly take the 'morning after pill' on Tecfidera, but as always check with your doctor as I do not know of your particular health history. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego #tecfidera #morningpill 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:
I actually stopped taking it for 4 years. I was totally fine and still am. I take liposomal glutathione, b12 and D3 and iron every day and am on a pescetarian (and mostly paleo) diet. I also do a lot of yoga and swimming. ...has anyone ever heard of someone being misdiagnosed with MS? I think my initial diagnosis was actually a reaction to a mix of vaccines I had before a vacation. Answer: Misdiagnosis of MS is very common. For many years now, approximately 10-20% of patients referred to our MS Center with a diagnosis of MS do not fulfill necessary criteria for this diagnosis. In many cases the reason for misdiagnosis is misinterpretation of and/or over-reliance on MRI findings. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego #MS #multiplesclerosis #msdiagnosis Here is My Question:
Is there a site where my MS diagnosis of 15 years can be treated? There are no local MS doctors and I have no reliable transportation to travel to another town. I'm in Decatur, AL Answer: You need an MS specialist who you can see in consultation at least once a year and who will work with your local primary care doctor or general neurologist. I would suggest traveling to the Vanderbilt University Multiple Sclerosis Center to see either Drs. Harold Moses or Ram Sriram or any of the other MS specialists in the program. Your local doctor should be able to provide a referral to their center. When I look up the travel distance from Decatur Alabama to Nashville it says it is only a 1 ½ hour drive. You can also contact the National Multiple Sclerosis Society for a list of certified compressive Multiple Sclerosis program within a reasonable driving radius. 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:
I WANTED TO KNOW IF A MRI WITH CONTRAST IS NEEDED TO SEE AND/OR DETECT ACTIVE LESIONS AND PML ACTIVITY. I'VE ONLY HAD ONE MRI DONE WITHOUT CONTRAST. I TRIED LOOKING ON HERE AT PREVIOUS MRI QUESTIONS BUT I COULDN'T FIND A QUESTION SIMILAR TO THIS. THANKS IN ADVANCE! Answer: Good question. An active lesion is defined as a new or enlarging non-enhancing lesion or an enhancing lesion. Strictly speaking it is not necessary to use contrast (i.e. gadolinium ) to detect active lesions since all enhancing lesions in MS are associated with a non-enhancing lesion on a non-enhanced study. Contrast can make it easier to identify active lesions, particularly in those people with lots of MS lesions. The problem with using non-enhanced studies to detect active lesions is the need to compare the image with a prior image done in a similar manner. Since you can only say that the new or enlarging lesion occurred since the last MRI was done, it is difficult to determine when the new lesion occurred. This is why MRIs are often done every 6 to 12 months in people with early relapsing MS. New MS lesions tend to enhance for only a short period of time (a few days to 4 weeks), so an enhancing lesion is more predictive of very recent activity, unless the unenhanced MRI is obtained at short intervals (e.g., every 1-3 months). In practice it is usually not that important to know if a new lesion developed in the past month or the past 6 months, if you are using the MRIs to monitor the response to a disease modifying therapy. However, it is important to obtain a baseline MRI after starting the therapy. Contrast is also not required to detect PML. In fact, most PML does not show enhancement on an MRI scan unless and until your body mounts an immune response to the infection. Diffusion weighted images (particularly DWI trace images) in combination with FLAIR T2 weighted images are most useful for surveillance detection of asymptomatic PML. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego #multiplesclerosis #PML Here is My Question:
When getting Covid while on Ocrevus, should we expect to gain less protective antibody production, as is the case when getting the vaccine? I'm assuming that actual response would be impacted by b levels, from when the infusion took place, etc.? (We know that b depleting therapies like Ocrevus will inhibit antibody creation when taking vaccines.) Answer: There are virtually no systematic studies about SARS-CoV-2 antibody responses post COVID-19 infection in people with MS (pwMS) on different disease modifying therapies, including Ocrelizumab. Most of out information comes from studies of antibody production after vaccination. This information can be summarized as follows:
It is important to remember that you can not assume a SARS-CoV-2 antibody response will be protective against infection. Many arms of the immune system not measured with an antibody assay, especially T cell mediated immunity, are important in the immune response that creates protective immunity. Furthermore, not all antibodies are able to neutralize the SARS-CoV-2 virus, a step necessary for protection. There are studies showing an association between IgG antibodies directed against the spike protein and the ability to neutralize the virus, but this type of neutralizing antibody assay is not routinely done in clinical practice. We continue to recommend updated SARS-CoV-2 boosters in pwMS on anti-CD20 therapy. Many sources recommend waiting at least 3 months after an infusion to get a booster, but it is likely that your immune response to vaccination will improve if you can wait 6 or more months or obtain an additional booster when you are able to be off anti-CD20 therapy for more than 6 months. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego #multiplesclerosis Here is My Question:
Does anyone still get flushing from Tecfidera after taking it for several years? Answer: Flushing can persist even after many years of treatment with Tecfidera or any of the Fumarates. The frequency of flushing decreases over the first 3 months but there are some people who continue to experience flushing with one or both doses. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego #MS #Multiplesclerosis #Tecfidera #flushing Here is My Question:
Can a solidity T2 hyperintensity be indicative of MS? Answer: Brain T2 hyperintensities, solid or not, are not specific for MS. If they occur in an appropriate clinical context (i.e. appropriate for MS), in the correct brain distribution with several other associated features, then the probability is higher that the T2 hyperintensity supports a diagnosis of MS in that particular case. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego #multiplesclerosis #MS Here is My Question:
Can Ocrevus and Dupixent be used together? Answer: I can only find one case report of the concurrent use of an anti-CD20 monoclonal antibody (i.e., rituximab, ocrelizumab or ofatumumab) in a patient also on Dupixent, a monoclonal antibody targeting IL-4 and IL-13. We have anecdotally used anti-CD20 monoclonal antibody therapies in a few MS patients on Dupixent for eosinophilic syndromes and asthma. While we have not seen any adverse effects attributable to this combination therapy, we have not treated enough patients to confidently state that this combination of treatments is completely safe. Physicians are trained to make treatment decisions when evidence is lacking. Your physicians will weigh the information available (risks and benefits) and advise you based on your circumstances. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego #Ocrevus #Dupixent |
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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