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Here is My Question:
I have small fiber neuropathy and have problems dropping things and balancing. My doctor just looks at me like I'm crazy when I tell her this. I work as a correctional officers and it is getting worst. I'm a liability. What to do about this? Answer: Small fiber neuropathy is not a symptom of Multiple Sclerosis. Talk to you neurologist about your ongoing symptoms with this problem. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego
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Here is My Question:
I drink everyday. How long should I wait to take Tecfidera? I am just starting medication today. Tecfidera is a gastric (stomach) irritant, and this effect could be enhanced by alcohol intake. Tecfidera can also damage the liver (usually mild and temporary), which could also be enhanced with daily drinking. Answer: I would advise no more than moderate drinking (1 drink daily for women and 2 drinks daily for men) and no more than 5 days per week (try to abstain at least 2 days out of the week). Avoid alcohol for about 2 hours after a dose of Tecfidera. Either stop drinking or stop Tecfidera if any significant elevations in Liver enzymes occur on treatment or if you experience significant gastrointestinal side effects and contact your doctor for further instructions. Obviously, you should avoid drinking altogether if you plan to drive, are pregnant or have a history of alcohol use disorder. You should also avoid drinking if you have other medical conditions or take other medications contraindicated by the use of alcohol. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
My husband and I are looking into egg freezing/ embryo banking. I know that I need to wait 6-12 months after receiving an OCREVUS (ocrelizumab) infusion to become pregnant, but does OCREVUS (ocrelizumab) affect my eggs? If so, how long after an infusion should I wait to harvest my eggs? Answer: There is no evidence that oocytes express CD20, the target of ocrelizumab and other B cell depleting agents. This means that Ocrelizumab should not have any effect on harvested oocyte (i.e. egg) cryopreservation. The medications sometimes used to produce ovulation or maturation of oocytes, particularly Gonadotropin releasing hormone agonists, may increase the risk of MS relapse in the 3 months following an ovulation cycle. This is postulated to be caused by ovarian hyperstimulation. In this case your B cell depleting therapy may protect you from post ovarian stimulation relapses. 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. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I read all your answers about Ocrevus and Covid vaccine timing, but don't really understand! If I get the Covid booster, how long should I wait to get the Ocrevus? My last Ocrevus was nine months ago. Answer: If you are already receiving treatment with Ocrevus, it can be difficult to time vaccinations. Different individuals have different risks for COVID19 infection, and this risk should be considered when trying to decide on the timing of a primary vaccine or booster. Whenever possible we recommend waiting at least 3 months after your last Ocrevus infusion to receive either a primary vaccination or a booster. We then recommend waiting at least 2 weeks after your second primary vaccination (Moderna or Pfizer vaccines) or at least 2 weeks after your booster vaccine to receive any further Ocrevus infusions. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
How often should a person with MS get an MRI? Answer; It depends on various factors: past (recent) history, age, what therapeutic you are on, how long you’ve been on the therapy, etc. on average it may be every 1-2 years during treatment once stabilized. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is my Question:
How long can Kesimpta be out of fridge before going bed? Answer: I cannot find any verifiable resources to answer your question. I suggest that you label the prefilled syringe with the amount of time it has been out of the refrigerator and re-refrigerate it until you can contact the Novartis Kesimpta resource line by email or phone. Go to kesimptaresources.com or reach out to Alongside™ KESIMPTA at 1-855-KESIMPTA (1-855-537-4678). Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Is it worth the risk to start Tecfidera when you are treated as radiologically isolated syndrome?9/9/2021 Here is My Question:
Is it worth the risk to start Tecfidera when you are treated as radiologically isolated syndrome? CSF was positive for bands but everything else was normal. Also the evoked potential tests showed very minor damage to right optic nerve (which I didn't notice). I got conflicting advice. Some neurologists said wait and see, others said don't waste time. Answer: "Radiologically Isolated Syndrome" (RIS) is an imprecise term since the word 'syndrome' literally means a group of symptoms, something presumably lacking in people with RIS. Radiological isolated MRI findings consistent with MS would be a more appropriate term. The number of individuals that we can continue to group under this designation has diminished over time with further risk factor characterization and longitudinal follow-up. Specifically, those individuals with both enhancing and non-enhancing MRI lesions that fulfill certain specificity criteria and those individuals with MS specific T2 hyperintensities plus definite evidence of intrathecal IgG production (e.g. CSF oligoclonal bands not present in serum) both should be considered pre-symptomatic MS. As more biomarkers are developed and validated (e.g. central vein signs, susceptibility rim lesions, quantification of myelination and axonal damage, serum neurofilament light chain measurements and measures of myeloid/microglial cell activation), further cases will no longer be considered RIS. It is important to remember the goal of these classification criteria; by defining the term RIS we enhanced our ability to better study and understand early pre-symptomatic MS, determine if there are other conditions that cause this radiological finding, and ultimately developed further opportunities to initiate education and management earlier in the MS disease course. I have often told patients over the years that the diagnosis of MS is probably less important than identifying risk factors and treatment modifiers that allow us to apply appropriate treatments more precisely with the lowest risk at the correct time to achieve the best outcome. So, to your question, you need to ask (of your MS specialist), What are my risk factors, and is Tecfidera an appropriate treatment for these risk factors? Assuming your exam is virtually normal (like most RIS patients), the main addition risks factors that are readily available include:
Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
is it harmful for an ms patient to use collagen peptides? Answer: We are not aware of any specific harmful effects of collagen peptide treatment in MS patients. 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. Here is My Question: Where can I find the paper for the phase II trials for Kesimpta and the lower dose given every 12 weeks? I was also wondering are their any trials going on with less frequent less B cell depletion and response assessment in MS? Answer: The phase II Ofatumumab (Kesimpta) clinical trial published in the Journal of Neurology is attached. This can also be found as a free access journal through a google search or PubMed. 
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Should patients taking Tysabri get a booster shot for COVID-10? Thanks! Answer: All people, with or without MS, over the age of 12 will require COVID19 booster shots. Starting in September all states will provide boosters to anyone over the age of 12 if it has been at least 8 months since their second vaccine dose with either the Pfizer or Moderna COVID19 vaccines. There is still no consensus in the US for boosters in those who received the single dose J&J vaccine, but it is reasonable to obtain a booster with another vaccine if you are immunosuppressed and received the J&J vaccine. COVID19 vaccine boosters should be given as soon as possible (as early as 28 days after your second COVID19 vaccine shot) to the following people with MS :
Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Tecfidera is an oral fumarate approved for relapsing forms of multiple sclerosis. It is taken twice a day with a relatively short duration of action. If you stop taking it, any benefit you were receiving from this medication will wear off over time. Good reasons to stop taking it include the following:
Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I had a spinal tap done and it came back with oligoclonal bands (OCBs) band number matching and negative for oligoclonal bands. Do I have MS? Answer: Spinal fluid Oligoclonal bands (OCBs) are immunoglobulins (also called antibodies) usually of the IgG subtype, although some labs also measure IgM Oligoclonal bands. They are called "bands" because of their stained appearance (colored stripes or bands in a row) on an agarose gel electrophoresis plate. For assisting in the diagnosis of MS, we look for Oligoclonal bands in a spinal fluid sample that are not observed in a matching serum sample obtained from a blood draw at the time of your lumbar puncture. Those bands that are seen in both the serum and CSF sample are not unique to your nervous system. They simply represent immunoglobulin that leaked into your spinal fluid from the blood stream. For instance, you could have 14 OCBs in your spinal fluid sample and 10 of them could match OCBs observed in your serum sample. This would mean you have 4 spinal fluid oligoclonal bands (14-10=4), each produced by plasma cells residing in your nervous system. Some labs consider an abnormal result as 2 or more unique spinal fluid OCBs whereas others consider 4 or more as abnormal. Oligoclonal bands are not diagnostic of MS and can be seen in people with many different inflammatory and degenerative conditions. People can also have forms of MS without Oligoclonal bands in the CSF. The presence of absence of spinal fluid OCBs are just one of the pieces of information we used to help establish a diagnosis of MS. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Is there any reason for a person with MS having knee replacement surgery not to have spinal anesthesia instead of general anesthesia? Spinal anesthesia is the norm at the hospital where I get care and seems to me to be generally safer. But my surgeon said anesthesia might be reluctant to use spinal anesthesia due to my MS. I have “ mild” MS that has not caused any significant mobility impairments….which is more than I can say for the osteoarthritis in my knees. I do not want to have general anesthesia for a number of reasons and feel like this would be second rate care based on superstition since *I* can’t find any data to support increased risk with spinal anesthesia. Do you know of any? Answer: Epidural and spinal anesthesia is widely accepted in most countries for people with Multiple Sclerosis. Most of the studies published concern the use of these forms of anesthesia at childbirth for cesarean section, but there is little reason to believe this form of anesthesia would expose additional risks for other procedures where this form of anesthesia is utilized in people without MS. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
After much consideration, I have made the decision to switch from Ocrevus to Tysabri. The options I am weighing are to either go to Kesimpta or Tysabri. Since Kesimpta is similar to Ocrevus I have decided to go with Tysabri due to the decline (clinically) that I was seeing with Ocrevus. Anyway, I have seen a lot of postings from people going from Ocrevus to Tysabri but not many the other way around. Is this a change that you see often? Also, in reading about Tysabri, I am wary of a couple of things: 1)PML- Although my JCV level is relatively low, 0.34, I would be lying if this does not worry me. 2)I know that due to the PML risk, Tysabri is usually not a drug that one is on for many years; I am concerned about "AFTER TYSABRI," as I have read, even on this site, "there is an increased risk of relapsing, usually within 6 months of stopping Tysabri." My MS has declined clinically in the last few years; going from walking normally to using a cane sometimes due to leg weakness, and also much more spasms and spasticity, but my MRIs have remained stable. I guess my main concern is since I have been so “stable,” with minimal decline, is going on Tysabri “worth the risk” of both PML as well as relapsing after stopping. Please let me know your thoughts on this. Thanks! Answer: Those are a lot of good questions. First let me eliminate some misinformation included in your question about the use of Tysabri
Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Are those of us on Rituxan/Ocevrus considered immunocompromised? Answer: People on anti-CD20 monoclonal antibodies (rituximab or Ocrelizumab) are selectively immunocompromised because of partial depletion of a subset of lymphocytes called B cells. B cells comprise approximately 20-25 % of circulating lymphocytes. The most common lymphocytes are CD3 positive T cells (70-75 %) and the least common at Natural Killer (NK) cells. Lymphocytes (T cells, B cells and NK cells), in turn, represent 20-40 % of total white blood cells in circulation. True old-fashioned immunosuppression drugs (often called chemotherapy) tend to suppress or deplete many different types of white blood cells. For instance, cyclophosphamide (cytoxan) , a form of chemotherapy, kills off many types of lymphocytes as well as other types of white blood cells (neutrophils) in a dose dependent manner. This can cause a broad array of infectious and even neoplastic complications depending on the duration of use Selective B cell depletion, at least with short term use, tends to be associated with far fewer infectious complications than more traditional immunosuppressants. Here is My Question:
I have pain nearly every day. My doctor said it is Levator Ani Syndrome pain due to my MS. Can I do anything to help relieve this pain? It is getting me down and every time I use my bowels it hurts even more. I am on CBD and THC oil and have been for 3 weeks but don’t feel any better. Have you got any suggestions about what I can do? Thank you kind regards. Answer: Levator Ani Syndrome is another term for chronic pelvic floor muscle pain, a syndrome almost entirely unique to women. Pelvic floor physical therapy (PT) is the therapeutic modality most effective for this disorder but requires perseverance given the chronicity of Levator Ani Syndrome in most people. You can start by looking for physical therapists trained in Pelvic Floor PT. Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Are eosinophils and absolute eosinophils typically high in MS pediatric patients at the age of 13 ?8/9/2021 Here is My Question:
Are eosinophils and absolute eosinophils typically high in MS pediatric patients at the age of 13? Answer: Eosinophilia is not a hallmark of MS. However this can be seen on specific therapies (such as Tysabri). A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I have a cough that won't go away. I used to smoke cigarettes and stopped about 8 months ago. For three months I have not not been able to breathe, I can barely walk when I stand or walk (not even a long distance) I'm out of breath. What could it be? The cause of your breathing difficulty and shortness of breath is not clear from your description but it is important that your primary care physician or a pulmonary specialist (lung doctor) evaluate this problem as soon as possible. If you cannot get in to see your doctor, you may need to be evaluated in an emergency room or urgent care center. Your difficulty standing and walking may be directly or indirectly related to your breathing difficulty and will also require an assessment after your doctors make sure your ability to breath normally is safe guarded. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Will 3T MRI pick up lesions not seen at 1.5T? From April 2005-May 2019 I never had a new lesion on 1.5T MRI. And no enhancing lesions have EVER been seen. But in June 2021 3T MRI was read as 3 new T2/FLAIR hyperintensities characteristic of demyelination disease, 2 left frontal and 1 left parietal though my neurologist says he only sees one new lesion. Clinically, I am stable with no flairs in 15 years. Since diagnosis in 2005 I have been on Avonex, Tysabri(12/06), Tecfidera (9/12), Tysabri(1/19). My JC title was ~3 so I was on a 6 week dosing interval when I restarted Tysabri because I couldn’t take the Tecfidera stomach distress anymore. I had a couple of prescribed Tysabri “holidays” and I was off Tecfidera for ~12 months before restarting Tysabri. And my MRI never seemed to change. In January 2019 about 3 weeks after re-starting Tysabri I had my first ever asthma hospitalization. In June my pulmonologist added Nucala to my asthma regimen of Advair, Singulair, Allegra and Flonase. In January 2020 I was hospitalized again after getting a cold from my grandson at his Christening. My Advair was increased to maximum dose at discharge. After my February 2020 Tysabri infusion I decided to stop Tysabri because 1)the pandemic (and I have since known of people who got infected at infusion or dialysis center and some died, Massachusetts was pretty awful early on) and2)possible interference with Nucala which blocks IL5 whereas Tysabri increases IL5. When I informed my neurologist of my decision and my rationale he responded that MS patients without severe disability were not at increased risk from Covid. But I am not just an MS patient. I am 64 yo with BMI of 33, severe asthma, type 2 diabetes (HgA1c 5.7 on Trulicity), and hypertension with fair control on 4 meds. I have always wanted aggressive treatment for my MS but it is not my biggest problem anymore. I also need new knees ( osteoarthritis) and have degenerative lumbar and cervical disc disease and spinal stenosis at C3 S/P ACDF at C5-6,6-7. My neurologist and pulmonologist finally talked to each other after my pulmonologist took the initiative and they agree that I can be on both Tysabri and Nucala. Really? My need for any DMT has not been addressed, nor my question about 1.5 vs 3T MRI. And I assume my JC titer is still high though previously I felt more comfortable about that (with increased dose interval) than my neurologist seemed to. He was always pushing Ocrevus which I am leery of with my asthma. I guess Kisimpta probably has the same risk issues without the nuisance of infusions. My veins are lousy. My insurance company makes me go to a center that is not that slick with bad veins. But I was fully Pfizer vaccinated as of 4/17 so that’s not an issue now. If I need to be on ANY therapy, what about Kesimpta? I already give myself Trulicity weekly and Nucala every 4 weeks. Another injection is irrelevant to me. Most of all, why can’t my neurologist see more than my MS? OY! I finally got comfortable with stopping DMT Rx and at my neuro visit we agreed I could stay off treatment in setting of stable clinical status and MRI. And then I had this 3T MRI. Answer: We’ll, that is a lot to take in! I’d be careful reading too much into the 3T v 1.5T MRI comparison. The higher field strength MRI will likely picks up mid pathology (whether it be from prior MS, hypertension, diabetes, we levered cholesterol, etc). Not all lesions are MS lesions and you identified at least a could other health conditions under treatment that can also lead to white matter lesion formation. Your question of whether you need DMT or not at your age is a valid one. Natural history cohort studies demonstrate that the average age where the inflammatory phase stops ranges from 53-55 years. One option could be holding DMT and reimagine on 3T in 6 months (monitoring for subclinical disease activity). You must exercise caution when stopping Tysabri due to the possibility of rebound disease activity. I’d suggest asking your neurologist about the need for DMT at this stage of your MS and if there is a comfort level for a drug holiday given your relative stability and age. When making a big decision like this, I suggest that my patients get another opinion from my colleague in MS. It never hurts to have a fresh set of eyes review your disease course. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente |
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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