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Here is My Question:
I have been to several doctors and also to an MS specialist who is still saying that my spots are suspicious of MS and that they are not active and old!! I have been having symptoms and the symptoms are getting worse week to week and having new symptoms that I just feel are pointless to tell her because I’m tired of her telling me that my lumbar puncture was equivocal for MS but was not within normal range either?? I still don’t understand what she means?? All my blood work is inconclusive except my C-reactive protein is elevated and my IGg index level was 0.70 in my CSF. I’m having a lot of issues with my right side and it all started with my left eye 6 years ago. I had an EMG yesterday that was normal except there was decreased activation of the right tibialis anterior muscle (not reduced recruitment). The doctor suspected this is related to pain, as I did have pain with activation of this muscle, but decreased activation can also be seen with central nervous system disorders. I never told this doctor I had a Nervous System Disorder?? Every doctor I see that reads my report and look at my scans say do I have MS? I reply “NO”, that’s what I have been told, well what are these lesions?? I have no history of strokes, heart problems, alcohol, drug abuse etc!! I’m a 46 year old mother of two that has been trying to figure this out and get the right answers!! It’s not a B12 deficiency, yes I’m an anemic and have potassium issues but take care of these issues. I have been Vitamin D deficient for a long time, but no one has test me for this not once. I would like to send a picture of my lesions to see what others think??!! This has been so stressful ! Thanks Answer: Thank you so much for telling us your story. I can feel your frustration. Let me try to explain. In medicine there are many problems that can cause frustration among both patients and their physicians. The first is disorders without a diagnostic test and highly variable presentations and courses. Top of the list are disorders like MS or Lupus. These disorders rely instead on a set of clinical criteria for a diagnosis that are never perfect and are often applied variably. For those who fail to meet the clinical requirements for a diagnosis of MS, it is imperative that their physicians explain what is going on and help them manage their symptoms. The patient must first understand that receiving a diagnosis will not necessarily lead to a treatment that alleviates their symptoms or even prevents worsening of their condition over time. In most cases failing to meet the diagnostic criteria for MS after 6 years tends to be a good thing; usually, the person either has a benign form of the disease or another problem altogether. What you need is a good neurologist who will take the time to explain why they think you do or do not have MS and is also willing to help you manage your symptoms. This can be hard but ask around I am sure you will find a doctor (perhaps not even an MS specialist) who is willing to help you. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego
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Here is My Question:
I'm a 70 y.o. female, diagnosed with MS in my 40's. Avonex stopped d/t side effects. Amazing response to Tysabri but became JC positive so switched to Copaxone. Anaphylaxis so started Aubagio. Dropped WBC and lymphocytes so stopped. Decided no more DMT. IgG also low so started IVIG with improvement of various issues Now on IVIG every 5 weeks and maintaining. I need to get a Shingrix shot but am concerned about interaction with IVIG. This is from the CDC site: "Patients who have quantitative B-cell deficiencies and are receiving immunoglobulin therapy should not receive either non-live or live vaccines while receiving the immunoglobulin therapy because of concerns about effectiveness of the vaccines". They also state in another place to wait between the two drugs, I think it was six months but can't find that source. I know I need the Shingrix, I just don't want to decrease its effect by dosing it incorrectly. The MD's all say it doesn't matter but that doesn't seem to be true. Does anyone on this site know ? Thank you. Answer: The issue you raise concerns the effectiveness of vaccination in the setting of therapy induced immune depletion or immune modulation. This is difficult to predict based on cell counts and impossible to measure when one is receiving immunoglobulin infusions. Let me explain. Vaccination generates both T cell and B cell immune memory, but we usually only measure the humoral immune response to the vaccine. Humoral immunity is referring to the measurement of antibodies that detect some component of the virus used in the vaccination. People who have received B cell depleting therapies (e.g., rituximab, ocrelizumab etc.) often have blunted, resting state immunoglobulin levels against the virus when tests are done to determine if they have adequate immunity post vaccination. These tests do not measure the cell mediated immunity (T cell responses) that is critical for eradicating intracellular viruses during infection, nor do they measure the prompt ability of your body to mount an antibody response following virus exposure. This later ability is achieved by long lived memory B cells and plasma cells. Immunoglobulin therapy has complicated effects, but for the purposes of this discussion, this therapy will make it difficult to detect your own antibodies (which are also immunoglobulins) produced by vaccination. Because of these difficulties we use approximations to determine when to get vaccines when receiving these therapies for MS or another condition. In the case of B cell depleting therapies, you definitely want to wait until the therapy is out of your system before getting vaccinated. In the case of Ocrelizumab and the rest of the high dose infusions that deplete B cells, this means waiting at least 3 months to get vaccinated after an infusion. Some argue to wait 6 months after an infusion to allow for some repletion of naive B cells. Clearly the longer you wait, the better the chance for an improved immune response with vaccination, but this must be balanced against the need for seasonal or yearly vaccine protection. You could see a doctor who specializes in allergy and immunology to determine your vaccination response to make sure you have protection. While it is harder to detect T cell responses to a vaccine because of the lack of commercial assays, you can determine if your body is able to mount a prompt antibody response post vaccination by simply giving a booster injection. People with good primary immunity will quickly generate a lot of detectable antibodies after a booster, whereas this response is delayed in people who have not generated immunity. I hope this helps. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
I am having peripheral neuropathy on my both feet and having pins and needles pain always on both my feet. I am taking Cymbalta 50 mg and pregablin 75 mg daily. There is not much relief. Can you suggest any good pain relief medication. Thanks Answer: You are taking low doses of pregabalin, so I would recommend asking your doctor if the dose can be increased gradually. If you require doses that make you sleepy in order to control the pain, make sure you only take these doses in the evening before bedtime. Other options are available but start with this recommendation. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
Are MS patients able to take pheromone for weight loss? Answer: I am not aware of Pheromones for weight loss. I suspect-based on its name-that this is a chemical scent advertised by its manufacturer as a means to reduce appetite and does not require FDA approval. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
What is PML? Answer: PML stands for Progressive Multifocal Leukoencephalopathy. This is viral infection of the brain caused by a mutated, "neurotropic" version of a common virus called the JC virus or Human Polyomavirus 2. Many if not most people are exposed to this virus in life, and it tends to remain dormant in your body without causing any initial or subsequent symptoms or disease. Under certain conditions of immunosuppression, a mutated version of the virus can proliferate and infect the brain causing PML. This is very difficult to treat unless the condition is detected prior to symptom onset (usually an MRI scan) and only if it is possible to reverse the immunosuppression rapidly. PML is most commonly observed in people with HIV and immunosuppression before they start highly active retroviral therapy. The emergence of PML in some individuals treated with Natalizumab (Tysabri), a therapy not considered a broad immunosuppressant, taught us a lot about PML prevention. Because of this knowledge there has been a dramatic reduction in cases of PML in the United States since 2012. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #PML #JCvirus #MS #multiplesclerosis Here is my Question:
First, thank you for your continued support and advice, I've learned so much from your Virtual MS Center. On your blog post, Is there information on the long-term impact of B cell depletion therapies (whether treating MS or otherwise)?, I wanted to ask if there is yet a way to determine whether the cells which return during the bone marrow repletion process are less autoreactive and/or better regulated? I'm hoping you will say yes, but I suspect you'll say no, not yet anyway. Another question: in general, if CD19 is still zero 6 months after Ocrevus infusion, is it safe to postpone the next infusion until B cells have started to repopulate? Answer: You are correct. At present we have no validated way to determine if the differentiated B cells which return post repletion are less autoreactive or, to reverse the question, when they can become less regulated and more autoreactive. We can look at the clonal size of certain autoreactive cells, but this still only tells us about structure and this information has not been associated with measures of actual MS disease activity. Can you postpone an Ocrevus infusion if CD19+ B cells are undetectable? You actually asked if it is "safe" to postpone infusions, but I am not sure what that means. The risks of postponing infusions in a relapsing or progressive MS patient are small. The real question is how long can you postpone infusions? We really do not know the answer to this question, but there you can ask how long is it safe to continue infusions every 6 months. This answer will depend on many factors including age, prior treatments, comorbid conditions, level of disability and how long you've been on Ocrevus or another anti-CD20 agent. Certainly, if you have an increased risk of infection or demonstrate increased infections on treatment or if your IgG level drops too much, then the risks may be considered too high. These are all individual decisions you must make with a clinician you trust who knows your condition and your goals of therapy. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
When choosing an infusion, are there any significant risks or benefits over selecting Tysabri verses Rituximab? Answer: Interesting question Tysabri is an adhesion molecule inhibitor that reversible interferes with immune trafficking in the brain, thus decreasing the potential for any new inflammatory lesion formation or relapses Rituximab and the other anti-CD20 agents are selective immune depleting agents with more sustained and in some cases long term effects on immune suppression. This theoretically has more long-term risk In practice they are both relatively safe compared to their remarkable benefits as long as you follow the rules for safe administration
Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #MS #multiplesclerosis #Tysabri #Rituxumab Here is My Question:
I was JCV negative until this month and my index is 3.49. My doctor doesn’t seem as concerned as I am. I am really scared. Isn’t this considered extremely high? Answer: A JCV index this high in a person on Tysabri increases the risk of developing PML in the future but should not be a cause for immediate concern. Specifically, this DOES NOT MEAN you have PML or will get PML. It does mean your future risk of PML may be as high as 3 % after 5 years of treatment. This is considered high for most medical or surgical treatments. There is a specific protocol we follow to mitigate the risk of PML when the JCV index increases to high levels while on treatment.
Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #MS #multiplesclerosi #JCVindex #Tysabri 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: What does this mean? "There is a nonspecific T2/FLAIR hyperintese focus within the subcortical white matter of inferior right temporal lobe (7/20)" Answer: Excellent Question What is a "non-specific T2/FLAIR hyperintense focus" on an MRI scan? Other descriptions which mean the same thing include, "non-specific white matter lesion" or "non-specific T2 hyperintensity". Some radiologists will push the appropriate limits on this description and use the term, "microvascular ischemic changes", although this is not an appropriate description since it implies a diagnosis that is often not based on the facts. Remember, a white spot on a T2/FLAIR imaging sequence does not mean demyelination. White spots essentially represent areas of altered interaction of water with the underlying tissue or replacement of tissue with essentially water. There are many causes, including primary or inflammatory demyelination. When we say non-specific T2/FLAIR hyperintense focus, we are referring to signal alterations within the tissue (basically white spots on the typical image viewed by your doctor) that carry no diagnostic specificity. The possible causes of white spots - including normal things like aging - are numerous and often depend on your age and other medical conditions, as well as their location, size, and appearance on other imaging sequences. When the "white spots" have the location, shape, size, and characteristics on other imaging sequences that are more specific for MS, it is appropriate for the radiologist to raise this possibility, but the radiologist cannot diagnose MS. Unfortunately, all too often the report says something like the following: nonspecific white matter lesions consistent with microvascular ischemic changes, migraine or demyelinating disease (MS). This is unfortunate since non-specific white matter changes require expert neurological evaluation to determine if any of these possibilities are correct. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #MS #multiplesclerosis #MRI Here is My Question:
Hello, Is it at all possible to have MS with a normal brain MRI? I’ve been dealing with progressive symptoms for almost a year now and I am just feeling completely hopeless on what to do. I’ve had numerous appointments with my PCP, I’ve been to the ER, had a ton of tests completed labs drawn with my OB and I had my very first appointment with a neurologist today that felt extremely unproductive. I have been dealing with numbness, tingling, intense burning bone pain in my legs, thigh and knee swelling, upper arm pain, balance issues, perimenopause, shaking and random hand tremors, excruciating rib pain and so much more. I also have a family history of MS and Guillian-Barre Syndrome. I have been joining virtual MS groups and told that it’s important to get a full head, neck and spinal MRI…but since my brain MRI was normal (which I got a few months ago) it’s being ruled out. I just feel like something isn’t right nor adding up and would be grateful for any support or advice you could offer. Answer: Diagnostic evaluations are highly dependent on a detailed history and examination. This can only be accomplished with an in person visit. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis Here is My Question:
Which DMT is best for me and safe for my fetus if I am going for IVF treatment? Answer: This is a difficult question to answer because of the many steps involved with in vitro fertilization. Generally, you do not want exposure of the egg after fertilization. Since each disease therapy is associated with definite pharmacological duration (Multiple the half life of the drug by 5 to be safe), it is relatively easy to determine the potential duration of exposure after last dose. Your neurologist should be able to help with his decision. If they are not familiar with the detailed pharmacokinetic or pregnancy recommendations for any DMT, they can always consult with a medical science liason from the drug company or ask for consultation from an MS specialist. Hope this helps. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis Here is My Question:
Can I get my JVC test done at any hospital? Answer: You can get the JCV Index done at any lab as long as they know where to send the blood sample for analysis Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #MS #multiplesclerosis Here is My Question:
My sister has relapsing/remitting form of MS and is currently under treatment with Ocrevus. She is doing quite well and other than fatigue and depression ( under treatment with antidepressants) she is a highly functional individual. Our concern is the increased risk of breast cancer that comes as a warning with Ocrevus - especially since our mum died from breast cancer at the age of 53. Would that be meaningful for my sister to switch over to the newly approved Briumvi when it becomes available? How real is the breast cancer risk with Ocrevus? Thank you a lot in advance. Answer: There are continuing reasons to be cautious about the risk of Breast cancer and other malignancies in people with MS treated with immunosuppressive therapies, including the B cell depleting therapies. Current B cell depleting therapies include Rituximab, Ocrevus, Briumvi and Kesimpta. Remember the risk of malignancy increases with age. Therefore, the most relevant clinical data sets will be those that include older people with MS. Ocrelizumab was studied in 2 separate trials involving younger relapsing patients and older primary progressive patients. The median age of patients participating in the Ocrevus primary progressive trial was 46, whereas patients participating in the relapsing trial were approximately 10 years younger on average. In the primary progressive MS clinical trial called Oratorio there were 11 cases of malignancy (4 cases of breast cancer) among 488 patients (2.25 %) treated with Ocrevus versus 2 cases of malignancy (no cases of breast cancer) among 244 patients (0.82 %) treated with placebo. As expected, rates of cancer in the younger patients participating in the Opera clinical trials for relapsing remitting MS were lower; there were 4 cases of cancer (2 breast cancer) among 827 people (0.48 %) treated with Ocrevus and 2 cases of cancer (no case of breast cancer) among 829 patients (0.24 %) treated with Interferon Beta-1a (Rebif). While these rates of cancer are still relatively low, it is also important to realize that they occurred within 3 years of onset of treatment- a relatively short period of time- and there was no formal screening of participants for cancer or cancer risk prior to onset of treatment. It is certainly possible that cancer was already developing in some of these patients prior to starting therapy and the expression of the cancer was accelerated by treatment. How do we use this information to help minimize risk of cancer on treatment? The most important step is to perform cancer screening prior to initiation of immunosuppressive MS therapy. The screening should be individualized for age, past medical history and family history but should, at a minimum, include baseline followed by annual mammograms in woman. Remember, these therapies are wonderfully effective, particularly in younger individuals with relapsing MS. Their effectiveness diminishes with age (> 50) and with progressive disease, while risk of cancer increases with age. Because of the differential risks of cancer and infections by age group and disease type, the decision on when to initiate or stop therapy must be made individually. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #MS #multiplesclerosis #Ocrevus #cancer #Briumvi Here is My Question:
BECAUSE I HAVE KIDNEY DISEASE, CAN I GET AN MRI WITHOUT THE EXTRA CONTRAST ADDED BECAUSE IT MAKES THE KIDNEY DISEASE WORSE? Answer: MRIs without contrast provide valuable information in people with known or suspected MS ; in fact, contrast is usually avoided in people with impaired kidney function. It is important to understand why we use contrast in clinical practice. Here are the most common reasons:
Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #MRI #MS #multiplesclerosis #DMTs Here is My Question:
Can I fill with hyaluronic acid and use polydioxanone threads? Answer: There is literally no information available on the outcomes in people with MS or autoimmune disease who receive hyaluronic acid injections with or without polydioxanone threads. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #hyaluronicacid #polydioxanonethreads #MS #multiplesclerosis Here is My Question:
Hello, I am 31 and has been successfully (EDDS 0) treated since 2017 (2 years of Tecfidera, in 2019 switched to Natalizumab, in 2020 switched to Cladribine due to high level of anti JVC antibodies). In 2022, 12 months after completing the second course of Cladribine, I got pregnant and on the 23.06.2023 delivered a healthy boy. I am breastfeeding. I feel well, completely asymptomatic, Still EDDS - 0 3 weeks ago, I had my routine check-up MRI which revealed two new lesions (1 of which is 6 mm GD (+). My questions are: 1. Should I have the 3rd course of Cladribine 2. If yes, can I stop breastfeeding for 14 days, then resume or: 3. Should I stop breastfeeding and be started a new medication (I have been offered options Cladribine od Ocrevus) I’d love to carry on with breastfeeding but I’m scared of the risk of the disease worsening I would appreciate your advice! Many thanks! Answer: Great question. The safest option- among those you mention- while breast feeding would be a single dose of Ocrevus. You could even receive a single lower dose of Ocrevus (300 mg x 1 dose). This would provide protection against recurrent MS activity for 6 months or more. Ocrevus is an IgG monoclonal antibody, and very little if any of the drug passes into breast milk. Most of the antibodies passed from the mother to child in breast milk are IgA type antibodies. We also now have several studies showing the safety of Ocrevus in breast feeding mothers. Remember, we pre-medicate people prior to the Ocrevus infusion with a dose of steroids and often Benadryl and Tylenol to prevent infusion reactions. Because the pre-medications may enter breast milk we recommend, pumping and dumping breast milk for at least 24 to 48 hours after the infusion. 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 P (Rip) Kinkel, MD Professor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Is it possible to get worsening of MS symptoms from a tooth infection (its a slight infection).9/1/2023 Here is My Question:
Is it possible to get worsening of MS symptoms from a tooth infection? (its a slight infection) I'm getting it extracted to avoid any possibility of a root canal failing or reinfection in the future. In addition, I wanted to see if antibiotics are needed before procedure? My DMT is Rituximab, so wanted to get some clarification if there were any contradictions. Thank you for your time! Answer: Infections, usually symptomatic but sometimes asymptomatic infections, are one of the most common reasons for worsening of MS symptoms. This is called a pseudo-relapse, because it is usually not possible to find evidence of acute inflammatory activity in the brain or spinal cord when this occurs. The dentist or orthodontist will determine if there is an acute infection or abscess that requires antibiotic treatment. Treatment with rituximab is not a uniform reason to require antibiotics with surgical procedures unless your neurologist feels you are significantly immunosuppressed by your prior and current treatments. The dentist may ask your neurologist for clearance to proceed with the procedure and whether you require any antibiotics. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #MS #multiplesclerosis #rituximab Here is My Question:
Which medicine is the best for a man that has had Hepatitis B? Answer: Prior Hep B infections do not limit our ability to use any DMT. If there is risk of latent activation of the Hepatitis B virus based on serological and antigen testing and you are planning to take a high risk Immunosupressive treatment (e.g., anti-CD20 therapies including Rituximab, Ocrelizumab, Ofatumumab and ublituximab), you will need to take entecavir or tenofovir (both anti-viral therapies) while on anti-CD20 treatment for your MS and for up to 6 to 12 months after stopping anti-CD20 treatment. As always, please consult with your doctor. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
Do you need to get labs before each Ocrevus infusion? Answer: Labs obtained before Ocrelizumab infusions vary from clinician to clinician. All clinicians obtain a hepatitis B profile (some also obtain Hep C, HIV and TB testing) before starting treatment and usually basic labs (CBC with differential and complete metabolic profile). Some also obtain a baseline B cell count (less commonly an entire B cell subset analysis) and Immunoglobulin levels before starting treatment. After treatment with Ocrevus has started, some clinicians only obtain a CBC with differential before each subsequent infusion, while others check Immunoglobulin and B cell levels. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #Ocrevus #MS #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.
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