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Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
Here is My Question:
Could I have MS with only one brain lesion? Answer: You can have MS with one brain lesion. There are several ways this can occur:
Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Clinical Neurosciences Director Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Hi I am on a waiting list to see a neurologist. I am intolerant to heat. I have no foot reaction when reflex test done. My arms and legs feel numb. I feel shaky confused and just not quite with it. Tired depressed and anxious. I was diagnosed with vitamin d deficiency last moth. Does this sound like MS? Thank you. Answer: We can not use a list of symptoms to tell whether a person has MS, just as we can not look at a list of words to tell a story. The diagnosis of MS or any other condition requires a patient, with the physician’s guidance, to link together their symptoms in a temporal manner that tells a story consistent with a particular condition.The physician forms hypotheses during the process of obtaining your history and ask further questions to either support or refute this hypothesis. We then use our examination and test findings to further narrow the diagnostic possibilities. Numbness, fatigue and heat intolerance are certainly symptoms that can occur in MS but are also very common with other conditions. A neurologist should be able to assist you in determining the cause of your symptoms. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Clinical Neurosciences Director Professor of Clinical Neurosciences University of California San Diego Question:
Can Rebif cause PMI in people with MS? Answer: There is no evidence that any of the interferons or glatiramer acetate are associated with the development of PML. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Clinical Neurosciences Director Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I am working through these thoughts and would appreciate any expert opinion/explanation that might be shared. The questions is based on the premise that 80% of people with MS experience some form of bladder/bowel dysfunction. Thanks for any insight you can share. As 80% of people with MS have these Bowel and Bladder issues it would be expected that the same effected area could be identified on a MRI scan on whatever machine is used and for all the 80% of people scanned. Do 80% of MSer’s have lesions on the spine at the same position? Does any research identify the reason why an attack on that nerve in the spine for 80% of people with MS, occurs? If the bladder and bowel are controlled in the frontal lobe of the brain, it appears unlikely that MSer’s would have lesion activity in that particular location. I believe lesions are generally not found in the lower section of the thoracic and lumbar spine where you would expect activity would affect bowel and bladder function. The spinal cord at C3, C4, C5 has 31 pairs of nerves. What are the chances that lesions in 80% of people with MS affects the bowel and bladder function? What is the commonality among people with MS that causes so many to have this problem? Answer: These are excellent questions on bladder control and relatively easy to answer. It helps to understand that the control of urine and fecal storage and elimination (i.e. bladder and bowel control) is an essential function involving large areas of the central and peripheral nervous system stretching from the most anterior part of your frontal lobes to the very end of your spinal cord and the plexus of nerves that supply the organs of elimination. This provides a very large territory for any potential neurological disease to cause problems with elimination. This is one of the reasons why almost any multifocal neurological disease can, and often dose, cause problems with elimination control at some point in the illness. This is particular true of diseases like MS that create demyelination and axon loss in white matter tracts involved in the control of bladder function. In fact there is a fairly good correlation between involvement of the spinal cord or brainstem pathologically by MS and symptoms of bladder dysfunction; both occurring, as you mentioned, in about 80 % of patients. However, many of the neural pathways that control urination are in regions of the brainstem and spinal cord that are difficult to see on standard imaging techniques; this is due to the location of these pathways in or near the gray matter of the cord or cerebral aqueduct and fourth ventricle of the brainstem or the lower parts of the spinal cord, all areas more difficult to image on MRI. We also know that very small lesions, below the resolution of imaging, can create bladder symptoms because some of the important pathways are small and condensed. Lastly is far more common for bladder problems to occur with bilateral involvement of the spinal cord or brainstem but this bilateral involvement does not need to occur at the same level or location. There is no single or common location for lesions to cause bladder symptoms and the urination symptoms created are the same (usually urinary urgency and hesitancy with variable amount of incontinence) regardless of the location of lesion anywhere between the brainstem and the sacral spinal cord. I hope this helps. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Clinical Neurosciences Director Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I have been on Tecfidera for a year now. I am also missing 8 organs including my large intestine. After a year the few weeks I have been having out of control blood pressure 205/155 and heart rate of 115. Can Tecfidera cause a heart attack or stroke? Answer: I am not aware of any data linking the use of Tecfidera to the development of vascular disease or hypertension. Tecfidera was associated with kidney toxicity in preclinical animal studies but this was not seen in human studies. Kidney problems can elevate blood pressure. You or your doctor should report this problem to Biogen Inc or the FDA. This is the only way we can learn about potential drug related problems in people who would not have been eligible for the clinical trials or to discover rare side effects that occur too infrequently to be observed in a clinical trial. You certainly fall into the former group since it is unlikely that a person missing 8 organs would have been eligible to participate in the Tecfidera clinical trial Here is the contact information for reporting side effects (taken directly from the package insert):To report SUSPECTED ADVERSE REACTIONS, contact Biogen Idec at 1-800-456-2255 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Clinical Neurosciences Director Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I was diagnosed with RRMS 2003 at age 50 (most likely had first attack at 37). I tried Avonex, but discontinued due to side effects. I had difficulty with insurance so hd no treatment for several years with stable brain MRI. Because of severe fatigue I started on Tysabri in 2009 and did extremely well on it (brain MRI stable). Spring 2014 JC indeterm/neg then fall 2014 indeterm/pos. No index done on positive sample, lab couldn't find one (this is my life!). Since I was worried about PML, I stopped Tysabri in Sept 2014 after a total of 52 treatments (spaced them out towards the end). One neuro told me to stay on Tysabri, not to take Tecfidera because it affects CD8 cells and those are the cells that may prevent PML. I was worried about PML so I started Copaxone after a 3 month delay due to insurance and pharmacy issues. Brain MRI stable with one C-spine lesion prior to starting Copaxone. 2015 JC neg/index 0.18. In July this year I started having much worse fatigue, paresthesias, and bladder issues and thought it was due to the relentless heat so I saw my neurologist. Brain MRI unchanged but Cspine shows previous lesion no longer present but two new lesions C4-5 and C7-T1 (two years between Cspine MRI's so don't know when they developed). So Copaxone isn't working. Currently have a JC pending. LFT's very slightly elevated (AST 44, ALT 64). Resting HR 48-50 so don't want cardiac side effects. What would you consider my options for therapy at this point? I have read all of the questions about JC index and Tysabri. One post stated that when restarting Tysabri the risk of PML is low for the first 24 months. Is that true regardless of JC being pos or neg? Is it true about Tecfidera and CD8 cells? What is the risk of PML on Tecfidera? Do you think there will be more cases of PML with Tecfidera as patients are on it for longer periods? Thank you for your help and for providing this site. It has been a wonderful resource! Answer: You have some good questions. Since I know very little about your MS other than your current age (approximately 63) and your disease duration (approximately 25 years), I will assume you have very little disability (you really only mention fatigue, sensory symptoms and “bladder issues”) and disease activity has been low (several new lesions in the spine with most repeat MRIs reported as stable even when not on treatment for long intervals). I suspect you have lots of options. Obviously, you need to discuss these options with your neurologist. These include: 1. Tecfidera; there is a very low if not inconsequential risk of PML as long as you monitor lymphocyte counts and stop the drug with any persistent 2-3 months) lowering below 600 2. Tysabri; your JCV index is low positive and you’ve been off long enough to reset the clock so to speak. Remember that being older and thinner are both additional risk factors for PML and if your disease activity is really low, this is not a great choice for greater than 18 months 3. Aubagio; it is well tolerated, effective and the liver enzyme elevations and hair thinning are definitely over emphasized. I suspect this is one of reasons it is used so widely in Europe and Canada. I generally avoid Gilenya in people of our age. To many potentially silent cardiac issues and there is the risk of shingles. Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Although I have been seen and had multiple tests I am not confident of the diagnosis. It all started a year and half ago. My general doctor thought I had MS and sent me in for testing. My symptoms are pins and needles and sometimes hot burning sensations in my hands and feet. Restless leg sometimes and whole body fatigue and sometimes fatigue just in my legs. I have dry eyes and pain in one eye. Sometimes in my eyes I have pain and it is foggy and I always have a constant dull pain. However it gets better when I wear my glasses. I have facial issues where it feels like someone is placing a feather on my face as well. I have lower back pain that is sharp but then goes away shortly after. And now my lower biceps have sharp pain and I am honestly not as strong as I used to be. Up to 50% difference. Lastly my neck is very tight and does not move as very well. Feels as stiff as my biceps now. I have been clumsy and off balance at times. Difficulties sleeping and when I wake up I am always exhausted. So I have had MRI of my brain and neck. The exam showed no legions. Back X-rays and mutiple blood tests including gluten sensitivity, vitamin b issues, Lyme's disease, 2d cardio gram in case I had a stroke, nerve conduction test, and a skin biopsy. The only test that came back positive was skin biopsy test. So the doctor diagnosed me with idiopathic small fiber neuropathy and no known cause. However he cannot explain eye pain and lower bicep pain and stiffness in my neck and lower biceps. Looking for any thoughts... Thanks! Answer: You’ve described a collection of fleeting, vague neurological symptoms. This rarely helps us establish a specific diagnosis in neurology. What is missing is a neurological history which can only be elicited by a competent neurologist. He or she should also perform a thorough examination to help determine the source of your problems. No amount of testing can substitute for a thoughtful evaluation by a skilled clinician Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Is there a positive correlation between having MS and cancer? Many people I know with MS also have/had cancer (including my self - Stage IV Breast). Because an occurrence of breast cancer makes a patient more susceptible to future cancers, I am interested in knowing if there is a more elevated risk due to also having MS. Answer: The verdict is still out on whether there is an elevated risk of cancer in Multiple Sclerosis patients. Most studies have shown no evidence of an increased risk of cancer but several outliers have shown a decreased or increased risk. It seems unlikely that an increased risk of cancer is associated with MS based on current available evidence. However, several treatments for MS may increase the risk of certain skin cancers and cancer of bone marrow derived cells (lymphomas and leukemias) and one treatment may increase the risk of bladder cancer. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego ![]() Here is My Question: I have a few questions: 3 days ago, I took my 2nd FULL dose injection of Plegridy. Is it normal to experience a loss of appetite while on Plegridy? With the first 2 injections (1/2 dose & 3/4 dose) I had minimal side effects. But, the 1st full dose injection and the 2nd full dose injection gave me intense FLS. Although they only lasted 1-2 days, I wanted to know if it's normal that my side effects got more intense, particularly after the 2nd full dose injection? Lastly, after how many (full dose) injections can I expect my body to better handle the side effects and ease up a little? Answer: Loss of appetite (usually labeled as anorexia in the PDR) is not uncommon as part of the flu like side effects of interferons. It is certainly not unusual for the side effects to worsen with the first few full dose injections. The side effects improve significantly in most people within the first 3 months at full dose. If they do not, I would certainly consider another DMT. Premedication with ibuprofen (motrin) or naprosyn (aleve) helps a little but you need to take these medicines regularly for 2-3 days after using Plegridy because of sustained biological effects. Your MS specialist can give you other suggestions if these premedications do not work. Some people get nauseous and loss their appetite because the Premedication they are using upsets their stomach. You may require a coated formulation or another better tolerated medicine if this is the case. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I've been told by my neurologists that I have a significant number of lesions in my C-spine area. I generally tend to sleep on my back at night, as my legs get tingly and cramp when sleeping on my side. However, after a few hours I'm awakened by pain and soreness in the back of my neck. Do you know of a device that can help and am I inflicting more damage by putting pressure in the area? Thank you. Sleepless in San Diego. Answer: The pain in your neck while sleeping is almost certainly not related to your MS. You need to find a better pillow. If you go on-line you will find an entire cottage industry devoted to the relief of neck pain while sleeping. It will require some experimentation on your part but you should find something that offers relief. Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Hi, I am wondering if it is possible to be diagnosed with MS if I only have lesions in my cervical spine? 11.5 months ago I had an attack and had one lesion in my cervical spine, and I also had the other markers/bands (I had pins and needles in my foot which ended up moving my leg, other foot and leg and arm). A few days a go a had weird sensations in my foot, went for another MRI and the old lesion was resolved but I have another lesion on my cervical spine. My brain is completely clear-the doctor says no question about it my brain is excellent. She did diagnose me with MS. I was under the assumption that "space and time" was at least two attacks and in 2 of the 4 areas of the CNS. I know I have the time but I do not think I have the space-unless I am interpreting it wrong. So my very long winded question is can I have MS-do I meet the "space" part? Answer: If your symptoms are consistent with inflammatory demyelination, and it sounds like they were, and there is an unequivocal new lesion in the spinal cord with CSF oligoclonal bands, then MS is a likely diagnosis. I prefer to be descriptive in my diagnostic criteria for the purpose of categorization and consideration of alternative diagnoses over time. So for instance, we would define you has follows: Clinically definite MS (CDMS): Relapsing partial transverse myelitis with multifocal cord lesions, normal cranial MRI, CSF oligoclonal bands, negative myelitis workup (assuming workup done) Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Answer:
There are many possible reasons for your legs to become suddenly weak. If your legs are suddenly too weak to stand up, especially if you stood up without any difficulty before this occurred, we consider this a potential medical emergency. If this is the case contact your doctor immediately or go to the emergency room. If you’ve experienced longstanding problems with leg weakness and standing as a result of your MS, this may be less of an emergency. It is best to contact your doctor immediately and get directions on the best course of action. Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
How do I know if incontinence is related to MS? Under the assumption that an individual under 50 who has just been to the bathroom and who really needs to go after an hour while walking and empties bladder completely involuntarily, is not within the range of normal -even after a coffee- is that a correct assumption? - I need to know if this could be relevant to an MS workup before I report and get dismissed yet again with 'nothing to worry about.' Thank you : ) Answer: Urinary frequency (the need to go in an hour) has many causes, mostly benign. Urinary incontinence unrelated to coughing, sneezing, straining or bending over (what is called stress incontinence) is definitely abnormal in someone under 50. There are many possible causes other than MS. A good urologist and neurologist working together should be able to figure out the cause of your problem. Good luck. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I was diagnosed with MS in January of 2012 after the severe onset of double vision. I was hospitalized for 5 days as they ran tests, including blood work, an MRI, a spinal tap, ultrasound & more. After being released, I went to a neurologist who wanted to do some tests of his own before beginning treatment. He explained that there were O bands found in my spinal fluid and with MS, the band's are only present in the spinal fluid or the blood, not both. However, when the band's were also present in my blood, he said that sometimes it can cross over, leaving me completely bewildered. There were lesions present on my brain as well as my spinal cord as well. Since this time, no one has been able to tell me how this is possible. Can you please give me some insight or possibly where to start? Many thanks! Answer: Oligoclonal bands in the CSF are a hallmark of multiple sclerosis, but are also seen with several inflammatory disorders that affect the nervous system. By definition an Oligoclonal band is an immunoglobulin of a particular specificity that is found in the spinal fluid but is not found in a matching blood sample. This means that the CSF immunoglobulin was made by a clone of plasma cells that resides in the cerebrospinal fluid circulation, but not in the blood circulation. Oligoclonal bands that are present in both the blood and spinal fluid are simply immunoglobulins that have passed from the circulation into the spinal fluid and are therefore not directly related to any ongoing inflammatory condition in the brain. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I know that "pins and needles" feelings is a symptom of MS, but what if it is a very mild sensation of "pins and needles. Can that be a symptom of MS? It feels like more of anoff and on shooting of pins and needles. Answer: Pins and needles sensation can be intermittent or persistent, mild or intense. Although these symptoms are common in MS patients, they are not all diagnostic of MS or even very helpful in establishing a diagnosis of MS. This is because pins and needles sensations are common in everyday life (limb falling asleep) and in people with other conditions. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Question:
Diagnosis two months ago and would like to hear more about my condition and when would I have been probably come down with MS? I'm sure I might have had this back when I was a pre teenager, mother used to yell at me for being clumsy. I'm 62 years old and thought Mother was right now I'm not sure what to think about my diagnosis. Please respond with possible answers. Answer: You have not provided us with any details about your condition, so it is very difficult to answer your questions. I can tell you it is very possible you have had MS for many years, if not decades. Ask your neurologist some of your questions to start and we can try to answer any specific questions you may have concerning your particular set of problems or concerns. Good Luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
Hi! I struggle throughout the day just to get around my house with a walker. I can barely walk, but I push through the best I can. Late at night, after 11pm, I can move about SO much easier with my walker. It's a noticeable shift in how my MS is affecting me. This "relief" comes at the worst possible time because I try to get a decent amount of sleep. Sometimes it's so tempting to stay up to enjoy my body's attempt at letting me walk again. Why do you think this shift might occur at night? Thank you for your time! Answer: You are not alone. Other MS patients have described a similar experience to me. One patient even provided me with videotaped evidence of her experience since I couldn’t believe she could walk at all when I would see her in my afternoon clinics in Boston; this was a patient who got around in an electric wheelchair during the day but found herself able to walk remarkably well during the middle of the night. This experience is related to the normal circadian rhythm in your body temperature. The lowest body temperatures are between 10 pm and 6 am every day and this is why your mobility and walking is better in the middle of night. Electrical conduction in the nervous system falters when your body temperature rises even 0.5 degrees in the afternoon. This experience of MS symptoms emerging in the afternoon when your body temperature is at its highest is just more dramatic in some patients than others. This is reason cooling vests, collars and hats are so popular with MS patients. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego ![]() Here is My Question: Does exercise help stop MS disabilities? Answer #1 Great question and thank you! Disability as a result of MS is due to the disease itself. A properly designed exercise program, while not stopping the disability per se, will allow you to overcome the severity and impact of your disability. I myself have MS, and it has impacted my lower body mobilities. It is critical that an exercise regimen includes strengthening not only the affected muscle group(s), but the entire body as well, including your heart AND lungs. Daryl Kucera Certified personal trainer and young sports conditioning coach Founder and owner of the MS Forward fitness gym in Omaha, NE. Answer #2 Exercise and progressive resistance training are the only modalities known to improve function in the majority of MS patients. Some drugs like Ampyra, can improve function in about 50% of patients, but the benefits are greater when combined when combined with an exercise and progressive resistance training program. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I have noticed swollen lymph nodes in my armpits and groin since starting Copaxone almost 3 months ago. Can Copaxone cause swollen lymph nodes? Is this a common side effect? If so, anything that can or should be done to help? Answer: Copaxone sometimes causes swelling of draining lymph nodes. THis is rarely a problem unless painful. There have been some case reports of cancerous swelling of lymph nodes in people on Copaxone but it is not at all clear that there is a causal relationship. There is nothing to do about the swollen lymph nodes except stopping the Copaxone. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego |
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