Welcome to the Virtual MS Center!
Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
Here is My Question:
I am 29 years old and about to start my treatment in one month, and I have the JC Virus. Does Rituximab have known side effects after several months or years of use? Also, if I ever decide to stop my treatment, will it severely impact the lesions in my brain, or will I get faster lesions after getting off of treatment? Answer: In the short term there are few risks other than infusion reactions (which are usually mild to moderate and improve after the first infusion), rare case of colitis (inflammation in the bowel), rare cases of herpetic reactivation (usually shingles), and an increased risk of upper respiratory tract infections (less commonly pneumonia) and some other common treatable infections. These risks generally increase with the number and duration of treatment infusions, the age of the patient, the degree of neurologic disability and the presence of prior immunosuppression or other co-morbid medical conditions. There certainly have been cases of PML in people on anti-CD20 therapy when no other cause of the PML could be found but this is very rare. Revere P (Rip) Kinkel, MDProfessor Emeritus Neuroscience Department University of California San Diego Here is My Question:
Are there any tests that can indicate if a person will develop MS even if they have no symptoms, but has multiple family members with MS? Answer: The question is, How can you determine if you are at high risk of MS before you develop symptoms or exam findings? For many years, we have known that people with MS often exhibit potentially prodromal symptoms, sometimes more than a decade before a definite diagnosis can be made even using the newer diagnostic criteria for MS. To my knowledge the first prospective study to report potential prodromal symptoms was the optic neuritis treatment trial (ONTT) designed and led by Roy Beck and first reported in early 1990's. A major secondary goal of the ONTT was to determine risk factors for a person to develop MS after an isolated episode of optic neuritis (ON). As you may know, optic neuritis is a common first symptom of MS but only 50 % ( a flip of the coin) of people experiencing optic neuritis develop MS; the investigators want to find out how to better predict the risk of MS after ON. There have been many reports from this study over the years of the predictive role of brain MRI findings in determining a group with a higher risk of developing MS. What people often forget is that the investigators also asked patients presenting with acute optic neuritis (an no knowledge of the MS) if they had ever experienced prior neurological symptoms before this episode of optic neuritis. It turned out that many people did experience prior symptoms such as paresthesia (i.e., unusual sensations), vague cognitive complains, unusual episodes of fatigue, and subtle urination problems to name a few, that were either not investigated or attributed to another cause. When the investigators lumped these symptoms together-calling them "vague neurologic symptoms"- and continued to follow patients over the years, they discovered that these "vague neurologic symptoms" were statistically associated with the future development of MS. Fast forward to the present and investigators have developed a more urgent interest in learning how to identify people with MS prior to the onset of symptoms by using a combination of prodromal symptoms, family history and genetic risk factors, and various biomarkers. The main motivation for learning to identify people with presymptomatic MS is the increasing number of studies suggesting that earlier initiation of disease modifying treatments leads to improved long-term outcomes. Many of these studies are in early stages of development and will want to recruit people with a family history of MS, since a positive family history already increases the risk of MS by a percentage based on the relationship of the relative(s). Stay tuned for more information. Great question by the way Revere P (Rip) Kinkel, MDProfessor Emeritus Neuroscience Department University of California San Diego Here is My Question:
Hello! I'm a 26 year old female who's been living with multiple neurological symptoms for over 10 months now. I've had multiple brain MRIs (done on 12/23, 3/24 and 7/24) along with MRIs of my entire spine (lumbar done on 3/24, cervical done on 3/24 and thoracic done on 7/24). All MRIs were performed with and without contrast. All of my imaging has come back normal. I've also been tested for Lyme, syphilis, HIV, bartonella, and SSA 52&60(RO)(ENA)AB IGG. All the results for these labs came back negative as well. I had a lumbar puncture done in March of 2024 which came back positive for 11 oligoclonal bands in my csf, but none found in my serum. To date, I've been collecting neurological symptoms like Pokémon. Mainly, I deal with left sided facial numbness (onset: 11/3/23), numbness/tingling in my extremities (onset: January 2024), muscle spasms/twitching (onset: February 2024), weakness and stiffness of my left calf (onset: mid February 2024), heavy feelings/pain in my legs/back when walking for too long (onset: March 2024), and watery bowel issues (onset: March 2024). These symptoms usually come and go several times throughout the day. They all started out as hardly noticeable, but have become more prominent with time. I think some symptoms have improved slightly with time (facial numbness, bowel issues). Other symptoms have gotten progressively worse (twitching, endurance while standing and moving around). Some symptoms have evolved a bit (calf weakness/stiffness is still present, but now it feels like my left knee is more affected). I take 20mg of amitriptyline for the numbness/tingling each night, and it caused this symptom to disappear for two months. It's been creeping back in during the afternoon and evenings though, so I suppose this symptom is getting worse as well. There are other symptoms, but to be honest, I can't keep track of them all anymore. I know that MS could be the most likely culprit for what's happening to me. I also know that I don't meet the McDonald criteria for an official diagnosis. Despite my clear imaging, I'm still scared of having PPMS. I've yet to have a true attack or relapse that I know of. The lack of visible lesions worries me as well, since I know that PPMS patients tend to have a lower presence of inflammation in their MRIs compared to RRMS patients. I've read stories of people suffering with chronic symptoms for years before finding lesions on their brain and spine and getting a PPMS diagnosis. I'm afraid this exact scenario could happen to me. Does my story sound like MS to you? I know I don't present like a textbook case, but I'm not sure what else could explain everything that's been happening. In addition, would anyone be able to clarify whether my case could be RRMS after all? I've yet to find anyone with a similar presentation/diagnostic story outside of PPMS patients. I'm scared of the possibility of having progressive MS so young. I know it's exceedingly rare, but my story already feels rare compared to many MS cases in my age range. Having RRMS feels like a long shot, but I'm scared of things progressing further. My current neuros have differing opinions. My first neuro said I most likely have MS based entirely on the results of my spinal tap. He even wrote me a prescription for Kesimpta. My second neuro doesn't think I have MS, and wants to test for every possible suspect. Being in limboland for so long has been mentally excruciating, and I just want to know what's happening to me, and if it will ever be able to stabilize or get better. Answer: The presence of a large number of oligoclonal bands (greater than 4) in the spinal fluid that are not present in a matching serum sample is an abnormal finding that usually requires explanation (see below). However, it is not diagnostic of multiple sclerosis without further confirmation. The first thing you must do is confirm that the oligoclonal bands that were reported in your CSF were distinct from those present in a matching serum sample. It is not uncommon for patients to be referred to us because of a spinal fluid report stating, "oligoclonal bands present in the CSF", only for us to discover that the small print states, "matching bands observed in the serum". Sometimes, the small print is excluded from the report sent to us and we must contact the lab for confirmation. Assuming the analysis did find 11 oligoclonal bands in your CSF that were not present in a matching serum sample, there are several possibilities:
Good luck Revere P (Rip) Kinkel, MDProfessor Emeritus Neuroscience Department University of California San Diego Here is My Question:
I am 70 and Negative for JCV Virus. My doctor wants to take me off Tysabri (I have been on for approximately 13 years. He wants to take me off cold turkey. Is that Safe? Will I experience significant breakthrough symptoms? Should I be weaned off rather than cold turkey? Any suggestions would be so helpful. Answer: This is a difficult question to answer without more detailed information. To begin with, it is unusual for people who are 70 to still be taking disease modifying therapies. Let me give you some information to help you discuss this question with your MS doctor. Rebound relapses after stopping Tysarbi,
Good luck Revere P (Rip) Kinkel, MDProfessor Emeritus Neuroscience Department University of California San Diego Here is My Question:
Hi there, so I passed my NREMT and am now able to get certification to work as an EMT. I am not in shape so I've been working out gently. I was diagnosed with MS last year and during the summer last year I started having difficulty walking. It was like tingling like my leg fell asleep except it hurt and would only stop if I stopped walking or sat down (sometimes it didn't always work then). I've noticed that I have issues with going up stairs on a daily basis and walking at a consistent pace. It's not that I feel those tingles though, it's just painful to move. All of this being said, I would really like to see myself move past this and do something I want to do by being an EMT. Even if I condition my body for the job, is there any reason I should not pursue this job? Answer: I am not able to determine if it is feasible for you to perform the duties of an EMT without knowing a lot more about you and your condition. If you have the ability to see a rehabilitation medicine (a Physiatrist) specialist where you live who has expertise in MS, this would be a useful person to see for assistance. By all means reach out to your MS specialist for advice, if you have one, or discuss this issue further with your current neurologist. Neurologists see people with mobility issues on a daily basis and are trained to assist them in meeting their goals of care, including maintaining their desired employment if feasible. Good luck Revere P (Rip) Kinkel, MDProfessor Emeritus Neuroscience Department University of California San Diego Here is My Question:
I'm an MS patient who's currently being treated with Tysabri. I've been reluctant to switch because I'm prone to side effects and was relived to have finally found a drug that allowed me to have a decent quality of life. I'm JCV positive and have been for some time, so my neurologist wants me to switch to Ocrevus (though we extended my dosing times which lowered my JCV numbers). Here are my questions. Am I taking too much risk trying to stay on Tysabri with positive JCV numbers?~Are there any doctors who would continue to prescribe Tysabri to someone who's been on it for over a decade and is JCV positive? Thank you! Answer: This is a tough question that we have answered many times on this site. The decision really comes down to relative risk and individual choice. The main risk factors for PML in people on Tysabri for MS include
The risk factors for continued MS relapses are younger age (< 50) and relapses or MRI activity in the year prior to starting Tysabri. We have registry data suggesting a markedly reduced risk of PML in MS patients taking Tysabri on extended dose intervals (usually 6-8 weeks between infusions) but these patients were not separated by JCV index status. A study run by the drug maker of Tysabri did show equal effectiveness of every 6-week infusions versus the usual every 4-week infusions as long as participants received every 4-week infusions for at least a year before extending the dosing interval. We also know that stopping Tysabri is associated with approximately a 30 % risk of relapse, so we always give a single cycle of anti-CD20 infusion (i.e., Ocrevus or rituximab usually) within 8 weeks of stopping Tysabri to prevent relapse. Overall, if people have been stable on Tysabri for many years (like you), are JCV Index positive, and are over age 55, we will often recommend a single infusion of Ocrevus or Rituximab after stopping Tysabri to prevent rebound relapses and then monitor them off of all treatment for any return of disease activity. Before giving them the infusion of Ocrevus or Rituximab, we make sure there is no evidence of presymptomatic PML. We only continue the anti-CD20 therapy infusions or injections in the listed circumstance, if people show a return of disease activity following the initial infusion I hope this helps. Please discuss these thoughts with your MS specialist Here is My Question:
Hello, I'm curious to know what labs are taken and looked into prior to next round of Rituximab (or b-cell depleting medication in general)? What is normal/concerning? What is tested? What will be something that would post pone infusion? Etc. I hope I'm making sense. Thanks in advance Answer: Excellent question. The FDA approved package insert only requires labs prior to the first infusion and includes a Hepatitis B serological profile and immunoglobulin levels. Since we know that treatment may cause immunoglobulin deficiency and other abnormalities in blood cell profiles and these deficiencies increase the risk of infection, most centers routinely obtain a complete blood count and differential (CBC with diff) and Immunoglobulin levels before each infusion. Most centers also check total CD19+ B cell counts before every treatment, although this is probably only necessary prior to the first treatment if you plan to receive infusions every 6 months according to the FDA approved dosing interval. If you plan to shift to extended interval dosing, an increasingly common practice to avoid prolonged B cell suppression, then you should get B cell counts or better yet, complete B cell subsets, prior to every infusion. This could then be used to guide when to repeat infusions. So to recap, minimal labs prior to every infusion are CBC with diff and Immunoglobulin levels, particularly IgG levels. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego The relative safety of surgical vs medical pregnancy termination depends on the stage of pregnancy. Generally, early termination, which is part of the indication for drug-based abortion, is very safe with drug-based abortion (i.e. mifepristone plus misoprostol). Medication abortion is indicated up to 77 days (11 weeks) after the first day of your last menstrual cycle. There are some contraindications to medication abortion including chronic corticosteroid usage and ectopic pregnancy but most of these contraindications are rare. You should definitely talk to your primary care or OB/GYN doctor about your options before making any decisions.
Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego What is the likelihood that I will have another attack especially now that I’m on a DMT?6/11/2024
Here is My Question:
I had an attack in November - a single thoracic spinal lesion was found and apparently lots of bands in my spinal fluid. No brain lesions. This was immediately following a round of IVF. Now being treated with Tysabri. My neurologists feel sure that this is early MS, but another neuro thinks it could very well have been a one time event. Two questions? What is the likelihood that I will have another attack especially now that I’m on a DMT? And do you think this could have been caused by the drugs in IVF stimulation medications? Answer: By 2017 diagnostic criteria (not by prior criterion), you currently satisfy the minimum requirements for a diagnosis of multiple sclerosis. Your risk of relapse is very low on treatment with natalizumab (Tysabri). A recent case control study from Denmark suggests that assisted reproductive technologies (including IVF using hormonal stimulation) do not increase the risk of developing Multiple Sclerosis. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
My son's neurologist recommended Ocrevus for PPMS 6 weeks ago. No reply from insurance company. Is this delay normal or cause for concern? Answer: Delays in obtaining approval for an indicated MS treatment are often caused by understaffed, overburdened Doctor's office personnel not having the time to respond to insurance requests to provide prior-authorization documentation. Contact the doctor's office to see if they've received any requests from the insurance company for further information. If they have not, contact the insurance company to learn the status of the request. Good luck Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
I am taking the mini-pill and forgot to take one the previous day (took the two as soon as I realized today) Is it still okay to take the morning after pill? Additionally I am still on my period this month. Thank you in advance for your assistance. Answer: If you miss your regular oral contraceptive pill by 24 hours and double up on your next oral contraceptive pill (take 2 pills), you do not need the morning after pill. I would check with whoever prescribed your oral contraceptive. Some people are on other medications which decrease the efficacy of oral contraception, and if this is the case your doctor may have other recommendations. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
Can I talk to a doctor online. I have severe agoraphobia? Answer: Most doctors are still doing video visits . The only requirement is that you must be present in the same state as the doctor. For instance, a person in Texas cannot have a video visit with a doctor in California, but a person typically living in Texas who is visiting California can have a video visit with a California doctor. Most doctors also want a referral from your regular doctor and would benefit from your medical records and images, if they are available. Formal telemedicine is organized differently and allows doctors to participate in care outside of their state. Far fewer doctors participate in these nationwide networks. Video or telemedicine visits cannot accomplish as much as an in-person visit. The examination is lacking and that is a drawback in Neurology. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
Would the serum band of 4 be considered MS? Answer: I believe you are referring to a lab report on the presence or absence of oligoclonal bands in the CSF and Serum sample collected at the same time. These reports sometimes provide the number of IgG bands in both the serum and spinal fluid (CSF) using a technique called isoelectic focusing. When we say a person has oligoclonal bands in their CSF, we are referring to bands without a homologous band present in the serum sample. Therefore, the presence of serum bands has no relevance to the diagnosis of MS. Only the presence of spinal fluid (CSF) bands without matched serum bands are relevant to the diagnosis of MS. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
Does MS causes burning mouth syndrome? Answer: It would be extremely unusual though possible for MS to directly cause anything akin to burning mouth syndrome. Many of the causes of burning mouth syndrome are more common in MS patients, so indirectly this syndrome may be seen in people with MS. These causes of burning mouth syndrome include nutritional deficiencies, medications (including those causing dry mouth), Sjogren's disease and some viral illnesses. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #burningmouthsyndrome Here is My Question:
Is MS a progressive disease? Answer: This is an excellent question. I think many people tend to use imprecise terminology when describing clinical features of MS. Let me give you a framework for many of these common terms.
The main problem with the casual use of these terms by both lay people and professionals is that they often are used for other purposes. For instance, the fact that MS is a chronic disease (i.e. it never disappears completely) is often confused with the concept of disease progression. While many people do develop progressive disease as defined in # 4 above, at least 25 % or more never develop evidence of progressive disease despite the chronicity of their condition. I hope this helps Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #MS #multiplesclerosis Here is My Question:
Now that Ocrevus has been out for a while and we have more information, do you think it is more effective than Tysabri? I recently read a study saying Ocrevus and stem cell transplant were similar in efficacy. The authors cautioned that there was only 3 years of data. Still, pretty impressive. Also, what is the risk of jc positive person transitioning from Tysabri to Ocrevus in regards to PML? I know there should be a MRI before starting Ocrevus. Answer: There are no randomized head-to-head comparisons of Ocrevus and Tysabri adequately powered to answer your question. Smaller observational comparisons suggest little difference in comparative efficacy in people with relapsing remitting MS. Both therapies compare well to the efficacy of Hematopoietic Stem Cell Transplant (HSCT), but with far fewer risks and side effects. Many JCV positive people with MS eventually switch form Tysabri to Ocrelizumab (Ocrevus), Rituximab, Ofatumumab (Kesimpta) or Ublituximab (Briumvi); in fact, the most favored treatment option after discontinuing Tysabri is treatment with one of these anti-CD20 monoclonal antibody therapies. Before switching it is important to exclude pre-symptomatic PML with a repeat MRI scan. Switching to an anti-CD20 therapy also dramatically reduces the risk of a rebound relapse after stopping Tysabri. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #MS #Ocrevus #Tysabri Question: Can you look at case studies for dupixent in MS and comment on them?
Answer: Dupilumab (Brand name Dupixent) was approved for the treatment of atopic dermatitis (i.e. eczema) refractory to topical therapies (i.e. applied to the skin) in 2017 and for adjunctive treatment of asthma in 2018. It is also indicated for treatment of chronic rhinosinusitis with nasal polyposis, eosinophilic esophagitis and prurigo nodularis (another skin condition). Dupilumab is a monoclonal antibody therapy that inhibits signaling of 2 cytokines (IL-4 and IL-13) known to be associated with these aforementioned conditions. According to recent posts by the manufacturer (Regeneron) there are over 800,000 people treated with Dupixent worldwide. The current FDA package insert does NOT include any warnings regarding the use of Dupixent in people with multiple sclerosis. A review of the literature in PubMed reveals 5 case reports (3 in a single publication) since 2021 of the use of Dupixent in people with MS. Case report 1 (Laageide L et al. JAAD Case Reports 2021 Sep; 15: 33–35) describes a 34-year-old woman with undiagnosed multiple sclerosis for a year who began Dupixent 2 months before an MS relapse and 4 months before her Multiple Sclerosis Diagnosis. She was not on a disease modifying therapy until after her diagnosis with MS . Dupixent was stopped and her MS was controlled with ocrelizumab. Case report 2 (Gelato F et al. Dermatol Ther 2022 Oct;35(10):e15740)doi: 10.1111/dth.15740)) describes a 21-year-old with severe atopic dermatitis started on Dupilumab in January 2019 with excellent results. However, after 1 ½ years on Dupilumab treatment he began to experience symptoms of multiple sclerosis (onset July 2020) which was diagnosed in September 2020. Treatment with dupilumab was stopped and his multiple sclerosis was controlled with natalizumab (Tysabri) Case report 3 (Esposito M, et al. JAAD Case Reports 2022 Nov 5:31:1-5. doi: 10.1016/j.jdcr.2022.10.031) describes three people with well-established MS, ages 47, 53 and 60, who received Dupixent for atopic dermatitis while receiving teriflunomide (brand name Aubagio) to treat their Multiple Sclerosis. None of the patients experienced a relapse or worsening of MS symptoms on Dupixent and their MRI scans remained stable. The authors of case reports 1 and 2 advised caution when using Dupilumab in people with MS. They hypothesized that inhibition of Th2 responses through inhibition of IL-4 signaling in susceptible individuals may aggravate Th17 mediated immune responses commonly associated with certain forms of autoimmunity including MS. It is important to note that both case reports 1 and 2 describe young, undiagnosed people with MS who started dupilumab before starting a disease modifying therapy for MS. In contrast Case report 3 described no significant adverse consequences of prescribing dupilumab in three older MS patients already on a DMT treatment. What conclusions can we draw from these case reports?
Professor of Neurosciences Director of the Multiple Sclerosis Program 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. #Dupixent #multiplesclerosis Here is My Question:
I got Rituximab 1st dose of 1gm, yesterday (18 March' 24) for MS, and 2nd dose is scheduled after 14 days, so what can I take on my end to improve, like any supplement or multivitamin? Answer: You've already started on an excellent treatment for relapsing MS, so you're off to a great start. A full program for managing any chronic neurologic disease requires a long-term plan of self-management. This plan will vary depending on your particular circumstances but must include the following:
Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
How do you determine if your MS symptoms are not from cervical spondylosis, cervical herniated disc, or kyphosis? I have a lot of cervical issues that have not been addressed and was only given MRI. I read that cervical issues could cause white matter changes in MRI. I also experience menstrual migraines. How do I know if my diagnosis is correct? Answer: It can be difficult to determine the cause of spinal cord symptoms, also called a myelopathy, particularly when the symptoms occur in middle aged or elderly individuals. Both degenerative disc disease and arthritis involving the cervical spine increase with age and may cause some impingement or frank compression of the spinal cord. Whether this compression causes any symptoms depends on how quickly it develops and whether there is compression of blood flow to the spinal cord. MRI scans can determine the degree of spinal cord compression and occasionally determine if there is limitation of blood flow or a contusion in the spinal cord. More commonly, we are able to see narrowing of the spinal cord canal space and flattening of the spinal cord at one or more levels but without any other alterations in the imaging characteristics of the spinal cord. In these cases, it takes a skilled neurologist using features of your history and examination to determine the likelihood that the compression observed on the MRI scan is responsible for your symptoms. This is most difficult in cases where there is also obvious involvement of the spinal cord by a disease such as multiple sclerosis. Some things to consider are the following:
Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis |
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.
Archives
September 2024
Categories
All
|