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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
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Here is My Question:
Could Ocrevus help manage my MS and inflammatory arthritis? Answer: Anti-CD20 monoclonal antibody therapies used to treat multiple sclerosis (examples include Rituximab, Ocrevus and Kemsimpta) are effective treatments for inflammatory arthropathies including rheumatoid arthritis (Rituximab is FDA approved ), psoriatic arthritis and ankylosing spondyloarthropathies (small case series only). Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
My EMG and NCV were negative but my left foot have been numb and tingling for four months and now it’s spread to my shin. My general practitioner says there’s nothing else to do, to just wait it out. Any advice? Answer: Persistent numbness of the left foot warrants an evaluation by a neurologist. That is your next step. It is hard to provide further advise or information without completely reviewing your case and, even then, you require examination by a trained neurologist. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I have primary progressive MS. I am not currently under any treatment for it. I also have atopic dermatitis and a dermatologist recently prescribed dupixent for me. I got my 1st shot of dupixent last week and though the skin is getting better I'm falling more. Does dupixent affect MS patients? Answer: Thanks for your message. Duplizumab (Dupixent is brand name) is an IL-4 receptor antagonist approved for refractory atopic dermatitis. A search of PubMed failed to find any reports of neurological complications or worsening symptoms in MS patients. I suggest an evaluation by your neurologist to determine if there are other potential causes for your worsening symptoms. These could include the current heat spell or an undetected infection. Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I have been having multiple symptoms since I had Covid back in January. I have had extreme fatigue for months that comes and goes. It seems to be getting worse and not better. I have weakness on my left side, especially in my left hand, When I try to do anything that require fine motor skills I have a difficult time. Even washing my hair with my left hand is difficult. I also have been having tremors on that left arm and hand that are worse when I try to do something that requires concentration. I’ve always suffered with headaches/migraines but they have gotten worse since all this started. I have low vitamin D levels and take 50,000 units a week. My vision is blurry especially when I wake up in the morning. I have numbness and tingling in my toes on my left foot. My PCP ordered an MRI. The MRI was done in February and I have attached the results below. All the symptoms have worsened since the MRI. My doctor said she thought I had Covid brain and I basically have been waiting hopefully that this would go away. I am convinced that it is something else and I’m going to see my PCP this week and ask to see a neurologist. I am 47 years old and I am a registered nurse and a mother of two children. I want to feel better and function like I used to. Answer: We are so sorry to hear about the emergence of your symptom complex following your SARs-CoV-2 infection. As you may already know from reports in the press, at least 10 % of people experience persistent fatigue, brain fog (impaired concentration, attention, and memory), paresthesia (numbness and tingling which can be painful) and weakness, all associated with a decline in self-reported quality of life following COVID19 infection. This is more common in women particularly those who experienced asymptomatic or mild infections. To be sure, it is also common for patients hospitalized with more severe forms of COVID19 to experience persistent symptoms, but these symptoms are more easily attributed to the lung or cardiovascular injury from the acute infection. The cause of Long COVID is still unknown and under investigation at multiple academic medical centers. Because there is no diagnostic test for Long COVID and the symptoms can mimic other conditions, including Multiple Sclerosis, it is important for people with Long COVID to undergo an evaluation by a neurological specialist to exclude these other conditions. Many academic centers have specific clinics for post COVID patients. There are able to provide an initial evaluation and refer you to an appropriate specialist to exclude other conditions, such as MS. I would call the medical center in your area with the most experience dealing with COVID19 and find out if they offer a Long COVID clinic for an initial evaluation. You will also need to see a neurologist. In the meantime, try to keep up your activity level and get adequate sleep. Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I've had MS for 17 years. Two months ago I was diagnosed with PBA. It was the worst I was so scared I couldn't stop shaking and feeling I was going to die but I knew better. My neurologist prescribed Neudexta and five days later I felt great. Now three weeks later I feel scared again and shaking but nowhere as bad as before. I left a message for my neurologist. I'm feeling scared but my brain knows I'm fine. I've never heard of this. Please help with any information. This has been addressed by Rio: https://www.healthcarejourney.com/cryinglaughing-uncontrollably-pba.html A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I know you can’t give me specific medical advice but I have 2 questions if you have time to answer them. 1. Regarding covid antibodies. I received the Pfizer vaccine about 4 months after my last Ocrevus infusion and the second dose about 3-4 weeks prior to the next infusion. My doctor wanted to test my antibodies because she is not convinced of the effectiveness. She checked the covid antibodies to the spike protein and they were totally negative. Does this have any value or should I assume it was ineffective? Do you ever suggest people get a second vaccine if they didn’t develop antibodies? 2. This is regarding misdiagnosis. I was dx in 2018 and now on ocrevus. I accepted the diagnosis but I still have moments of denial. I am wondering if I have a clear cut dx or one i should second guess. initial symptoms never required hospitalization. started with what I now know as the hug. Around the lower ribs/chest and upper abdomen. IT has always been the worst symptom to the point of almost not being able to breath. I have it controlled on trileptal. I had memory loss of entire situations and had an EEG (negative) and MRI. The MRI shows lesions in all the typical spots including “dawsons fingers”. Other MRIs showed 2 spinal cord lesions. I had negative o bands though. I have major cognitive issues and now on disability. Main things are tremor, hug, memory, word mixing, numbness/tingle, spasms and spasticity, temp issues, FATIGUE. Should I question the diagnosis since I don’t have o bands? It seems to just get worse with no relapse or new lesions. Answer: Very good questions and hard to answer. Here are my thoughts:
Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I have had hot flashes, severe fatigue, headaches for days, terrible fatigue, leg pain, shoulder pain, neck pain, blurry vision, and cognitive issues for six months. Neurologist said it was coincidence. Where do I go next? Blood work was normal as was a brain MRI. Answer: We are very sorry to hear that you have suffered for so long without answers. While it is not possible to establish a direct doctor-patient relationship on our website, we can help you analyze your problem so that you are at least asking the correct questions. The most important observation I can make is that your symptoms do not necessarily indicate any neurological problem. For instance, fatigue and body pain are two of the most common symptoms in medicine, both caused by a multitude of ailments. Your only two suggestive neurologic symptoms are blurry vision and "cognitive issues". Blurry vision is easy for an ophthalmologist to evaluate. One of the most common causes for blurry vision these days is dry eyes often exacerbated by staring at computer or cell phone screens for a prolonged period. I am not sure what you mean by, "cognitive issues", but the perception of fogginess, forgetfulness, inability to concentrate and word finding delays ("tip of the tongue phenomenon") are often related to disrupted sleep, stress, anxiety or depression. You need to find a good family doctor or internist who will work with you to address your constellation of symptoms in a methodical and organized manner. You must approach your problem with an open mind to possibilities you may not have considered and accept that lifestyle adjustments may be required on your part to help alleviate your symptoms. Good luck to you. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Hi does Ocrevus cause weight loss? Answer: Treatment with Ocrevus will have no effect on your weight. However, we usually premedicate people with steroids just prior to their infusion to prevent infusion reactions. Short courses of steroids can cause water retention and short-term weight gain, but should not have a lasting effect on your weight. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I am 61 years old...I was diagnosed with RRMS about 10 years ago, I am not taking any DMTs. I got very sick over this past Memorial Day weekend and based on my symptoms, my PCP did some Lyme blood tests... they came back positive lgM and was confirmed by western blot. I began antibiotic treatment right away. I am wondering how a Lyme infection will impact MS. Thank you. Answer: Any infection can potentially worsen MS related symptoms. This applies to Lyme disease as well as more common infections, such as an upper respiratory tract infection or a urinary tract infection. Most patients with uncomplicated, acute Lyme disease will respond promptly to a 14-day course of doxycycline. Transient worsening of MS symptoms during treatment can be managed with rest, hydration, and nonsteroidal anti-inflammatory agents. Rarely, we provide a short course of oral prednisone for worsening MS related symptoms with loss of functional abilities that doesn't respond promptly to several days of antibiotics or for certain manifestations of Lyme disease such as facial palsy or swollen, painful joints. It is uncommon for people with MS to experience long term worsening of their condition related to an acute infection, although this can occur. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I haven't had any new lesions in 11 years. Last week, I was told that two 2mm lesions were seen on my MRI. I am currently having no new symptoms. I can't be seen until next month by my neurologist. Is there anything I should do in the meantime? Answer: 1 very small lesion in 11 years as described is phenomenal. The majority of lesions that show up on the brain MRI are clinical silent (or “asymptomatic”). It is unlikely that you need to do anything different over the next month and I’d suggest simply waiting for that appointment. If you have the ability to message your neurologist in the meantime that would be the best 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. Here is My Question:
A question was asked about Selective Androgen Receptor Modulators (SARMS) being used to treat MS patients in 2019. There has been more research and studies done since then and I wondered if we had any progress relating to us MS patients? Answer: There are no approved indications for selective androgen receptor modulators and I am not aware of any studies being conducted in Multiple Sclerosis patients Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Would kundalini yoga is helpful for someone with MS? Answer: Kundalini Yoga combines the physical benefits of standard Yoga with meditation and mindfulness (generally considered a more spiritual practice than standard yoga) but the extended postures one must assume can be difficult for those with certain physical disabilities. I would recommend learning this technique in a class, preferably one that includes people with physical disabilities that require them to adjust their technique. 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 have been taking Tecfidera for 2 weeks and already have seen an improvement. Is it normal to see an improvement so fast? Thanks. Answer: Tecfidera, like all DMTs, do not improve symptoms but help alter the disease course (measured by neurological exam disability scoring, confirmed relapse frequency, and new lesion formation on MRI of the brain). These metrics are determined in the clinic with the treating physician (it is possible to have persisting symptoms while the DMT controlling the underlying MS disease course). I wouldn’t draw the conclusion that tecfidera (or other DMT) is improving your symptoms. I’d take the ‘win’ that you are feeling better and leave it at that! A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I was diagnosed with RRMS 10 years ago... I had COVID 19 back in January 2021 and it was a long recovery... do I need to get the vaccine... if so, do I need both shots? Answer: The CDC currently recommends COVID19 vaccination at least 90 days following complete recovery from a COVID19 infection. Deciding whether to follow these guidelines is complicated in people with MS and depends on the following information:
If you decide not to get vaccinated now, stay tuned to any updated information provided by the CDC and local health officials to help with your decisions. Those who have not experienced a definite COVID19 infection should get vaccinated for the personal benefits as well as the good of society. Remember, this virus must infect humans to replicate and mutate. It is the mutations that cause more infectious and lethal variants to emerge, as we have seen in Brazil and more recently in India. India was doing well in their control of the virus for the first year, other than a minor spike in the fall of 2020, but failed to vaccinate people when vaccines became available. The result is a public health disaster. This could happen anywhere if the infection is allowed to linger in residual hosts (i.e. non vaccinated people). 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 ok to take Tecfidera for protection as I am rapidly moving into "secondary progressive MS" and Ocrevus is not an option as I have breast cancer history! Any advice from you would be much appreciated. Answer: There are many options for people in the late relapsing phase of multiple sclerosis, including Tecfidera. We do not provide specific prescribing advice on this site but the following general guidance may be used to help with your decision.
Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Can a person with MS have his tattoo removed by laser? Answer: There is no MS related contraindication to tattoo removal. 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 safe to change from Tecfidera to Ocrevus, I’ve read they are seriously interactive? Answer: It is possible to transition from Tecfidera to Ocrevus. The clinician can evaluate through blood testing the status of the patient’s immune system to safely transition. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Three weeks ago today I got the Moderna vaccine, had chills that afternoon and sweating that night. All was well until this week, Tues. (which was 2 weeks and 4 days after the shot) I had chills in the afternoon and much worse sweating the middle of that night. Again on Thurs. of this week, more chills, but no sweating, and today more chills. I phoned my Dr. and was told it probably wasn't related to the vaccine, maybe a low grade infection, but if it keeps up to get blood work, etc. done. Could the vaccine trigger a flare or something to do with the immune system? Has anyone else had the same problem? Answer: About 10% of individuals can get the injection site swelling, rash, and various symptoms. I, in fact, had this reaction with the first dose. The second dose has been reported as more difficult for some individuals. Again, I too had that reaction with Moderna. I would interpret this as your immune system reacting to the vaccine, producing cytokines (protein chemical messengers) that lead to these various symptoms. Some MS patients understand the relationship between cytokines and similar symptoms because they’ve been treated with interferon-beta disease modifying therapies. While I can’t say that you didn’t have another cause such as an infection of some sort, I would first consider this being vaccine related (or rather your immune response to the vaccine). I also would look at this as evidence that the vaccine is stimulating your immune system in a positive way. There is no evidence that the vaccine triggers new MS inflammation (we also have lots of experience vaccinating our patients over the years and haven’t seen that concern). However, when your core body temperature rises, that can influence nerve signal conduction which could bring out old symptoms of your MS. Some consider this a “pseudo-relapse” because it isn’t new MS inflammation but simply the influence of heat on nervous system function for a period of time. 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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