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I have had 2 rounds of Lemtrada. I responded well after the first round. I have regressed 1 yr after round 2. Loss of strength, foot drop, spasticity. No new lesions shown in recent MRI but limp and discomfort are obvious. We are discussing either a 3rd round of Lemtrada or a different DMD. I have been on Avonex and Tecfidera previously. We had thought Lemtrada would slow my progression but it has not. Contemplating stem cell. Answer: There are many reasons for a lack of response to immunotherapy in MS, but a very common reason is lack of anticipated response. By this, we mean that the individual on therapy is either in a progressive phase of the disease or over the age of 55, an age generally associated with a diminished response to currently available DMTs. HSCT is most effective and currently justified in ambulatory, relapsing MS patients under the age of 45 with evidence of activity (relapse or MRI) in the prior 2 years despite highly active DMTs. 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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If my MS is stable why has my walking deteriorated? Answer: There are many reasons for people with MS to experience worsening ambulation that are not necessarily related to disease activity. Here are some common examples:
Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
Can Kesimpta use cause hair loss? Answer: Kesimpta is not reported to cause hair loss or expected to cause hair loss 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:
What’s the latest on people with B cell depleters (rituxan) and vaccines? I had th J&J shot and then a booster. Do I need a third? Also what’s the MS neurology opinion on Evushield or other monoclonals? Can we access? And if so what’s the timing recommended? Answer: People with MS who are receiving treatment with S1P modulators (Gilenya, Mayzent, Zeposia, Ponvory) and lymphocyte depleting agents (e.g. rituximab, Ocrevus, Kesimpta, Lemtrada and Mavenclad) may have an impaired antibody response to COVID19 vaccination. Whenever possible, vaccination should be completed prior to commencing therapy or after stopping the DMT for a time interval that is dependent of the specific therapy. You should never stop any of these DMTs, even briefly, without first discussing the safety and advisability of doing so with your MS specialist. Decisions regarding the timing of vaccination and altering treatment are highly complex and depend on your MS risk factors as well as your risk of severe COVID19 infection. Per press release, AstraZeneca's Evusheld (tixagevimab co-packaged with cilgavimab) is a long-acting antibody (LAAB) combination with emergency use authorisation (EUA) in the US for the pre-exposure prophylaxis (prevention) of COVID-19. Availability is expected to be limited. The Food and Drug Administration (FDA) granted the EUA for Evusheld for pre-exposure prophylaxis of COVID-19 in adults and adolescents (aged 12 and older who weigh 40kg or more) with moderate to severe immune compromise due to a medical condition or immunosuppressive medications and who may not mount an adequate immune response to COVID-19 vaccination, as well as those individuals for whom COVID-19 vaccination is not recommended. Stay tuned for more information. 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:
Will Kegel exercises improve my bladder incontinence? Answer: Kegel or pelvic floor muscle exercises can help diminish urge incontinence by inhibiting bladder contractions. These exercises are a staple of treatment for those with neurogenic bladders, particularly younger individuals. Additional treatments are often required as well, including timed urination and defecation, eliminating constipation, limiting fluid intake during certain times of day and often the addition of appropriated dosed medications. 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:
Can MS patients take collagen? Answer: There is no know problem with MS patients taking collagen or amino acid supplements 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:
Are there any Cosmetic laser therapy procedures that should not be used on someone with MS due to their use of heat? Answer: Not that we are aware of at this time. 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 have been on fingolimod for 3 years and I know there is a risk of having skin cancer as a side effect. My question is that I am thinking of getting facial hair removal that uses/sprays laser to my face. The question is am l increasing the risk of skin cancer by exposing my skin to laser; also I live in a very sunny place. So exposure to both will or will not cause or contribute to skin cancer, l do not know. What is your advice? Answer: There is no data available that could answer your question. The risk of skin cancers is higher with many of the immunotherapies used for treatment of inflammatory diseases. I have no knowledge of hair removal procedures contributing to this risk in any manner. The risks are very low to begin with and totally eclipsed by the risk of excessive sun exposure. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Hi, I was diagnosed with MS in 2018. I had a negative spinal tap so it was a long road of ruling out other possibilities. About every 3-4 months I ended up having a hug episode of denial were I have to do a bunch of research and review my MRIs over and over and try to explain away my symptoms. It is excruciating. I finally told my neuro the other day and she is going to test me for MOG as one last rule out. After looking into it, I read that it is mostly associated with optic neuritis and transverse myelitis but I’ve had neither. I do have 2 spinal cord lesions and several periventricular lesions, cortical lesions, and lesions in and around the corpus callosum. No intratentorial lesions or cerebellar lesions. I don’t have mobility issues so I think that’s my biggest thing. I also don’t have the usual relapses or suddenly having to go to the hospital and have never had enhancing lesions. I also have black holes on T1 for pretty much all of my brain lesions. I have some mild atrophy too. I have cognitive issues causing me to be on disability and a terrible MS hug pain unless I take trileptal. I have mild nystagmus and a significant tremor. I also have some occasional incontinence. Very bad cold intolerance. And other things. My MS specialist says mine is mold and definitely not primary progressive. Anyway, what would the differentials for those findings be? Are black holes associated with other neurological issues? Are black holes and white matter lesions like this ever a normal finding? Have you ever seen people not have usual relapses but just have accumulating slow progression in symptoms and no walking issues? Have you ever had an MS patient never have enhancing lesions or optic neuritis? I’m just looking for differentials to consider if any to discuss with my doctor and wondering if these are ever “normal” to see on an MRI. P.S. I’m a Nurse Practitioner Answer: You raise some very good questions about MS diagnostic criteria. Let me touch on a couple of points and show you where many physicians make mistakes in the interpretation of diagnostic data.
I hope this information helps. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences 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.
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