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I am taking Tecfidera for MS and my rheumatologist wants me to start taking Prolia for my Osteoporosis. My concern is that one of the possible side effects of Tecfidera is developing PML and I heard that a possible side effect of Prolia is also developing PML. Obviously, I don’t want to be on two drugs with the same serious side effect. Are you aware of any cases of PML associated with people on Tecfidera and Prolia? Thank you. Answer: I can find no evidence of linkage between Prolia (Denosumab) and PML in a PubMed search. The FDA adverse event reporting site lists cases of possible PML in a rare number of people on Prolia who were also taking medications known to be associated with the development of PML (e.g., Rituximab). This would not be considered a relevant relationship. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #Tecfidera #Prolia #PML #MS #multipleslcerosis
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What are the chances of relapsing with MS after surgical abortion if you take Vumerity before and after pregnancy? Answer: There is no data on risk of relapse after pregnancy termination with or without disease modifying agents. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #MS #multiplesclerosis #relapsingms #Vumerity #pregnancyandms Here is My Question:
I saw a neurologist to discuss MS due to the following symptoms: severe fatigue, intention tremors, heat sensitivity, cognitive issues, and right arm weakness. I had these symptoms about 10 months ago following a viral infection. The symptoms resolved but recently returned and symptoms are reoccurring in the same sequence as before. The doctor very quickly told me fatigue has nothing to do with MS and that I’m actually depressed and could have Chronic Fatigue Syndrome. I have read so much information about MS and fatigue that I’m confused as to why she would say that they aren’t related. The description of MS fatigue is exactly how I feel and all my symptoms worsen when I get hot. I don’t know if I should be relieved or get a second opinion. Answer: It is unfortunate that you experienced this response from a neurologist. MS can be difficult to diagnose at times, but we do have very good diagnostic criteria nowadays that help to shorten the interval of uncertainty for many patients. However, certain symptoms are not terribly useful for diagnosing MS. These symptoms, while often known to support a diagnosis, would never be used as part of the diagnostic criteria because they lack any specificity for the disease and are commonly seen with other diseases. Fatigue probably tops the list in this category and most fatigue worsens in the heat. This does not mean the symptom is not important; it only means that most clinicians would not rely on this symptom, regardless of the description, to make a diagnosis of MS. I would recommend finding a more empathetic specialist to help you better understand the basis of your symptom complex. Keep an open mind and focus on reaching an outcome that makes you feel better. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #MS #chronicfatiquesyndrome Here is My Question:
Can a 68 year old with relapse/remitting MS, with slowly advancing balance issues, who had been on Ocrevus, but has been recently treated for Stage 3 squamous cell lung cancer with cisplatin/chemo and radiation therapy use Imfinzi/durvalumab? We know the many possible side effects for people without MS. And we realize it's all very new... Answer: Durvalumab is a form of cancer immunotherapy called an "immune check point inhibitor". To understand how these therapies work will require a little explanation. Certain proteins (i.e.,CTLA-4, PD-1) typically expressed on the surface of immune cells (for instance, T cells) interact with a complementary protein (i.e., B7, PDL-1) on another cell (for instance, an antigen presenting cells or tumor cells) to prevent the immune cell (usually a cytotoxic T cell) from attacking and destroying the target. This is one of the mechanisms animals use to regulate immune responses. This form of regulation is important to prevent autoimmunity or excessive immune responses, but also prevents the immune system from attacking cancers effectively. There are many different types of immune check point inhibitors available to treat solid cancers. One thing they all have in common is that they have revolutionized the treatment of solid cancers that used to respond very little to treatment. CTLA-4 inhibitors provide a check on the initial immune activation step whereas, PD-1 and PDL-1 inhibitors prevent tumors and normal tissue from turning off immune responses directed against these tissues. durvalumab inhibits PDL-1 and has been shown to be effective against lung cancer, as noted in the question. All check point inhibitor therapies are associated with a risk of autoimmune reactions but less commonly directed against the nervous system. The actual percentage of patients with reactions directed against the peripheral or central nervous system varies in the literature but is probably between less than 10 % of people treated. Those already carrying a diagnosis of immune mediated disease, such as multiple sclerosis, may be at increased risk for worsening of their condition when treated with these therapies, but the data is very thin. One study using an analysis from an administrative database (not the most ideal for understanding mechanisms or outcomes) reported that 30 % of MS patients who received an immune checkpoint inhibitor experienced at least transient worsening of symptoms, but we don't know the extent of worsening or the persistence of worsening in these cases. Interestingly, the authors did not report any cases in people with MS treated with durvalumab, but this may be due to the limited experience with this drug in MS patients. Most immune mediated reactions to check point inhibitor therapy responds to temporary cessation of treatment and initiation of corticosteroid therapy. This would generally be the approach taken with any MS patient undergoing treatment. I would hypothesize that prior treatment with ocrelizumab may help protect against certain types of immune reactions with check point inhibitor therapy, but this is speculation on my part. These are tough decisions to make during periods of stress. I wish we had more definitive information for you at this time. For these types of treatments your oncologist will benefit from an experienced MS specialist, so make sure your entire team is on board. Good luck to you Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #MS #Durvalumab #Ocrevus Question:
How can you heal optic neuritis when you have multiple sclerosis? Answer: Optic neuritis due to multiple sclerosis will generally heal on its own spontaneously. However, if your neurologist recommends it, you can be treated with high dose IV steroids (or equivalent oral steroids) for 3 days. Steroids will speed up the recovery of vision from optic neuritis due to MS however it will not change the final visual outcome. So eventually the vision will get better with or without steroid treatment. The more important issue to discuss with your neurologist is how to treat your multiple sclerosis. There are > 20 FDA approved therapies for treating/managing MS and that type of discussion needs to occur one on one with your neurologist. Benjamin Osborne, MD Director, Neuromyelitis Optica (NMO), Neuro-Ophthalmology Clinics and MS/Neuro-immunology Fellowship Director Associate Director of the NIH/Georgetown Neurology Residency Program Medstar Georgetown University Hospital Here is My Question:
Is it possible to have MS with a normal brain MRI? Answer: It is possible to have MS with a normal brain MRI although this is uncommon. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #MRI #MS Here is My Question:
I am a 27F, and first noticed positional pulsatile tinnitus about a year ago. It seems to be getting worse, as it used to only happen when laying a certain way but now it happens occasionally when I stand up. I have headaches at least once a day now and always in the same spot, the top right side of my skull, in line with my ear. Yesterday I experienced a pins and needles sensation in the left side of my face only. It happened about 4 or 5 times, and lasted for a few seconds each time. I have not had it happen today, thankfully, but it concerned me. I am considering and we visit if it happens again. Could these symptoms be connected and could they be a sign of MS? Answer: I am sorry to hear about these annoying symptoms. I would need far more information to help but let me give you some information that will help you find the right doctor.
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 have multiple MS type symptoms but my brain and spine MRI normal, my CSF is normal and evoked potential normal. Does these rule out MS? Answer: Nothing rules out MS completely during the early evaluation of symptoms, but a normal MRI of the brain and spine make the diagnosis of MS much less likely. This website is for information purposes only. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #MS 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. Is it possible to have a first thoracic spine lesion with stable brain MRI over 10+ years?7/10/2023 Here is My Question:
Is it possible to have a first thoracic spine lesion with stable brain MRI over 10+ years? Or is it more likely that the lesion (called focal signal abnormality on MRI) is caused by something else? Thank you for your time. Answer: There are several possible explanations for the apparent emergence of a new lesion on a thoracic cord MRI. For the sake of my reply I will assume that you have undergone MRIs of the thoracic spine in the past and they did not report any 'focal signal abnormalities'
Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #MS #spinalcord Here is My Question:
I have lost info about a free Seminar on treatments for MS. Can you share them again? Answer: Our Educational Seminars focus on the Integrative Management of MS and are held at the Adapt Functional Movement Center (see address below) every other month. We post an advertisement for each seminar about a month before each seminar. The seminars rotate through a series of topics during the year with topics added each year. The next seminar will focus on the Integrative management of MS related symptoms and will be held on August 21, 2023, from 5 pm to 7 pm. If you plan to attend in person, arrive at 4 pm to enjoy live music, good food and interaction with staff, vendors and featured speakers. All speakers are chosen for their experience and expertise on a given topic. Whether you plan to attend in person or by video visit, please register in advance so we are prepared to meet your needs. Adapt Functional Movement Center in Carlsbad 2732 Loker Avenue W Carlsbad, CA 92010 / 760-688-7323 Join us in person or online! Advanced registration requested: https://give.classy.org/MSseminar Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #MSeducation #MS Here is My Question:
I was wondering if in your practice you have seen many cases of Myoclonus? I have been experiencing painful "spasms" for a couple of years now that we have been unable to really control. I have tried and failed many different drugs such as Gabapentin, Pregabalin, Baclofen. We then went to Trileptal which did help and still helps but at my current dose of 600mg 3x a day I have developed Hypoanatremia so we have been trying different drugs to replace the Trileptal. My neurologist finally diagnosed me with myoclonus /dystonia as I get these spasms in my right shoulder area causing my head to jerk forward. Other drugs I have tried and failed on recently include Vimpat, Keppra, Tizanidine, Lyrica, Lacosamide, and now Clonazepam which is also not helping. The partial relief I get with Oxcarbazepine is the best I have at this point. I am beyond frustrated, and I just wanted to know if any of the doctors here have patients with similar experiences. My leg weakness, fatigue, etc. are things I can deal with, but this is truly decreasing my quality of life. Answer: We do see myoclonus in people with MS, but it is not painful unless the sudden jerking movement involves a joint of soft tissue with arthritis or some underlying injury. Most painful involuntary movements in MS are a form of dystonia called tonic spasms. These spasms are responsive to Carbamazepine, Oxcarbazepine, and other anti-convulsant class medications. There are other options for your doctor to try. He or she may consider adding lamotrigine first. If adding lamotrigine doesn't work some people will respond to phenytoin. It sounds like your doctor is doing a good job of trying different medications. Keep working with them to find a more satisfactory solution. 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 went to the hospital due to a droopy left eye. The doctors said it was either a stroke or multiple sclerosis. They did test after test and came to a conclusion that it wasn't a stroke. They then proceeded to have my brain scanned through MRI. The test came back that I had a lesion. The test said: Mildly scattered periventricular and subcortical white matter hyperintensities are identified. The largest is seen in the right centrum semiovale/corona radiata and has the appearance of a Dawson's finger. There is a tiny focus of restricted diffusion seen in the left medulla. I had an MRI with and without contrast on my spine. Both came back negative of any lesions. Anyway, after this test I was scheduled for a lumbar puncture. The test results were kappa free light chain, CSF .1010 H mg/dl<.1000. This is positive. My band test came back CFS bands and olig which was can you give me some clarification on what means could condition still be considered a cis will I have to undergo more MRIs in the future? Thanks so much I love this website. Answer: The data provided is compelling evidence of an inflammatory central nervous system disorder. There are always uncertainties in diagnosis. This is particularly true shortly after the onset of the problem. Important questions to answer include:
Revere P (Rip) Kinkel, MD Professor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplsclerosis #MS #CIS #clinicallyisolatedsyndrome Here is My Question:
My spinal tap came back positive on my Kappa free light chain test and also positive on my oligoclonal banding test. Is there any chance that I could still not have MS? Answer: You can have oligoclonal bands and elevated free kappa light chains in CSF but still not have Multiple Sclerosis. The positive predictive value of a test usually depends on the pre-testing probability that a person has the disease in question. If your probability of MS (based on history, examination and MRI findings) is low prior to testing, then the test results are far less predictive of this diagnosis. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #oligoclonalbands #multiplesclerosis #MS What is the cause of my white matter lesions and how are they determined to be “nonspecific”?6/20/2023 Here is My Question:
I’m a 34 year old female. I have had extreme fatigue for 2 years (sometimes sleeping 18 hours in a day) and experience regular eye movement problems (daily for 1.5 years now.) My brain MRI from April found “minor scattered nonspecific FLAIR white matter hyperintensities.” I have never consumed alcohol or smoked, have only ever had low blood pressure, and have been vegetarian for 20+ years with no cholesterol problems. I visited an ophthalmologist who said my optic nerve looks good but my eye problem is a hallmark symptom of MS (it gets worse in the heat) and suggested I see a neurologist. One last thing I’ll mention.. I had severe mono 20 years ago and was curious about my EBV antibodies. Over the last year my VCA igG AB climbed from 463 to 529 u/ml and NUC ag igG has been >600 u/ml. Sorry for the long message and the specificity to my situation. Questions: 1) What else can I look into for the cause of my WMHs? 2) How are WMHs determined to be “nonspecific” or not? Any advice would be very appreciated as I’ve been struggling to get appointments with specialty centers. Thanks very much. Answer: Very good questions. Let me break up my response into specific points
Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #MS Here is My Question:
My MRI report shows Encephalomalacia with gliosis also with ex-vacau dilatation in Right Parietal Region extending to peritrigonal region. I have symptoms like seizures, absence, numbness in body, tremors, drowsiness, dizziness, fatigue. Will all this lead to MS in future? Answer: Encephalomalacia simply means there is evidence that the tissue matrix and cells has been destroyed or damaged in an area of the brain. When this occurs adjacent spaces in the brain enlarge to fill the area once occupied by the tissue which has disappeared (this is the "ex-vacuo dilatation" mentioned in the report). Gliosis means scaring; on MR imaging this usually appears as a chronic white spot (called a FLAIR or T2 hyperintensity) usually adjacent to the area of encephalomalacia. None of these terms are specific for any disease state. For instance, these findings can be seen after an injury occurring at birth, a prior infection, prior trauma, prior surgery, chronic multiple sclerosis, a stroke or any number of other conditions. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
What could be causing my tongue to burn every time I eat and I also suffer from gum infections and just recently I keep having nose bleeds. Answer: Your symptom complex (burning tongue with eating, gum disease and nose bleeds) could be due to multiple different problems (medications, viral infections, systemic diseases) or vitamin deficiency, particularly vitamin C and B vitamins. You need to discuss the possible causes with your primary care doctor so you can initiate necessary testing and treatment. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego Here is My Question:
I have always suffered from shin splints - sometimes just from walking quickly, but definitely when running, so I just don't run for exercise. These splints make it difficult to lift the fronts of my feet until the pain passes. I have also often got cramps in my feet if I am in a certain position and they come on FAST. I was recently diagnosed with benign MS after suffering temporary (months long) blindness in half of my field of vision (both eyes) that began 18 months ago. MRI's at the beginning of this detected two optic lesions, no spinal lesions. A few months ago, I had another MRI and two new lesions in different spots, had appeared. Is it possible that the shin splints and foot cramps were an early symptom of MS? I find it hard to believe that I ( a 57 year old woman) have had MS and didn't know it - especially given that MS symptoms usually start well before middle age. Perhaps these were early symptoms that I never investigated? Thank you. Answer: Chronic neuroinflammatory and degenerative conditions generally emerge over 3 phases:
Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #MS #shinsplints Here is My Question:
I have female patient who has had MS complete paralysis for over 10 years now, is age 50 and is not sick nor has any chronic illnesses. Mentally stable, can move her head and shoulders, slightly able to move her chest forward, Just want to ask if is there anything that could help her move her arms and legs again, She’s bedridden and utilizing a wheelchair when going out of the house. Answer: To my knowledge, your patient would not be a candidate for any current research studies to restore function to paralyzed limbs. Mind controlled interfaces bypassing areas of injury in the spinal cord (so called digital bridges) to volitionally activate gait programs in the lower spinal cord are now possible following spinal cord injury. Other approaches including cybernetic frames to assist residual movement or mind-controlled robotic limbs are also possible. The main problem with MS is the diffuse injury and damage to the nervous system; there is not a single injury at a spinal cord level in most cases of MS. This diffuse injury makes it difficult, though not impossible, to apply these techniques. In particular assisted activation of movement using attached frames is an area of research using MS patients. If you find any research group interested in using MS patients for these applications, please let us know so we can post the information for our readers. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #restorefunction #spinalcord #MS #multiplesclerosis Question:
Thank you for generously sharing so much information and knowledge on your website.
Answer: Regarding telemedicine consultations, these are typically available at most tertiary care centers that have an MS specialist. However, the physician needs to have a medical license in the state in which the patient resides. And of course, the physician will need to have access to the MRI images to review them. Otherwise, the patient will need to travel with the imaging studies to the state where the MS center is located. Benjamin Osborne, MD Director, Neuromyelitis Optica (NMO), Neuro-Ophthalmology Clinics and MS/Neuro-immunology Fellowship Director Associate Director of the NIH/Georgetown Neurology Residency Program Medstar Georgetown University Hospital |
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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