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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
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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 |
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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