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Here is My Question:
I am 69, almost. You have told me I should not be concerned at my age for any relapses, so don't need to take any medication for my MS. My MS was not diagnosed until I had my worst relapse at age 64 in 2012. They put me on Rebif (liver), and other things different times after. My worst problem has always been memory and cognitive issues, which have gotten worse because I have taken nothing since my aneurysm in 2015. My feet and legs are very painful now, which never had much problem with except for the pins and needles. Anyway, in 2017, I had another MRI and they found I have 33 new lesions, as I started out with 2 in 2012. I also had a spinal tap and lots of blood work to rule out anything else. My concern now is cognitive. I can't remember directions to places and my daughter moved into a new house and I complained I had only been there once. She told me, no, you have been here 4 or 5 times. So, you get my general idea and concern. The neurologist I am going to wanted to me try Tecfidera. He tested me and said I definitely had cognitive issues. He is allowing me to wait until August and have another MRI, see if there are anymore lesions to see if I got worse without medication. So, I guess, I don't know what to do. No medication will help me? That is what you told me earlier. I would like to read an article about this, but you never gave that to me. I would appreciate that. Scary when you are getting older, you don't want to add to "old age" issues. I have a lot of responsibility at my age. Taking care of 96 year old father, husband with diabetes, etc. I must stay well. These are my concerns. Terrible fatigues as well. I am also suffering from high blood pressure, which scares me because of aneurysm, but I am taking my med for that. Just too many things to think about, I suppose. Forgive me for telling all that, but I just want some good advice. Conclusion: so even though I have a lot more lesions develop in my mid 60's, it is very rare to have a relapse. My new neurologist told me that's crazy. Answer: If you previously saw me in clinic (and your message seems to imply you have seen me as a patient), please contact me at UCSD through the EPIC MyChart system, so I can review the details of your illness and get back to you directly with my thoughts People at your age can have very active MS, but it is rare. When this occurs it is always important to know if there are contributing factors (e.g. chronic smoking) or the diagnosis is incorrect. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I am a 36 women with MS. I want to try freezing my eggs. My question is if I want to do this process, should I be off Avonex? If yes how long? Answer: There is no data about the interaction of interferons with the process, so it is hard to advise. We make personalized recommendations based on a patient's history. There are some concerns for relapse while on hormones for harvesting eggs, but no prospective data – so this should be discussed with your treating neurologist. Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Ambulatory Care Department of Neurology and Neurotherapeutics Director, Transverse Myelitis, Neuromyelitis Optica Programs Co-Director, Pediatric CONQUER Program UT Southwestern Medical Center Childrens Health Dallas, Texas Tel 214-645-0555 Here is My Question:
Do patients with MS have abnormal blood results? And are blood tests factored into a diagnosis of MS? Answer: Bloodwork is usually normal is MS and there are no blood tests that are part of confirming a diagnosis of MS. Benjamin M. Greenberg, MD, MHS, FAAN, FANA, CRND Vice Chair Translational Research and Ambulatory Affairs Department of Neurology and Neurotherapeutics Director, Transverse Myelitis and Neuromyelitis Optica Program Co-Director, Pediatric CONQUER Program Department of Pediatrics UT Southwestern Here is My Question:
What is the main difference between Rituxan and Ocrevus for people with PPMS? Answer: Both drugs target the CD20 molecule on B cells and lead to B cell depletions. Rituxmab has a mouse based protein backbone and Ocrelizumab has a humanized backbone. Ocrelizumab is the only one of the two which has received FDA approval for PPMS. Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Ambulatory Care Department of Neurology and Neurotherapeutics Director, Transverse Myelitis, Neuromyelitis Optica Programs Co-Director, Pediatric CONQUER Program UT Southwestern Medical Center Childrens Health Dallas, Texas Here is My Question:
I've had RRMS for 25 years and I've been pretty fortunate so far. I have been on Tysabri now for about a year. Twice during the year, I was taken off the medication for crazy MRI approvals I needed to have because I am JC positive, and during both times I experienced symptoms. That said, my MRI's came be ok or even better. This last time was about 2 months ago. I was taken off because I stupidly said I had a headache, they made me go back for blood work and an MRI, so I did. My MRI came back not bad but I was given IV steroids for 3 days 2 weeks ago. I just received my dose of Tysabri on Saturday. Its a week later and I feel pins and needles in hands and feet. So is my nervousness for nothing, should the steroids be working, can you give me any insight what so ever on why this would go on? Thank you in advance for any information. Answer: Pins and needles or paresthesias are common in people with MS, as you probably know. These paresthesias, in isolation, do not indicate a relapse. There is some evidence that pins and needles sensations are part of the recovery phase from a relapse. It is important for you to determine if the pins and needles sensation are precipitated by anything in particular. Many people with MS will report more abnormal sensations later in the afternoon and early evening as their body temperature rises. The occurrence of paresthesias can also be precipitated by stress and anxiety. It is hard for me to comment on the other concerns in your message without knowing more about your history. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
Recovering from relapse - 500mg methylprednisolone for 5 days 2 weeks ago. Contracted a norovirus early hrs on Sat had to have fluids IV/anti spasm/paracetamol in A&E. My plegridy injection due now (fortnightly) been using since Oct last year. Shall I inject now? Answer: I suspect you will receive my response too late to help you this time around. The answer, if this happens again, depends a great deal on how you are feeling and whether or not you usually experience significant flu like side effects with Plegridy injections (or any interferon injection). If you are feeling really sick and feverish from a viral infection, I usually recommend skipping your Plegridy injection until you are feeling better in a few days. If you have a mild viral syndrome and normally experience few if any side effects from Plegridy, I usually recommend taking your injection to stay on schedule. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
Here is my athletic life history: In my late 20's I was diagnosed with bilateral TN, 30's the visual, fatigue, isolated muscle issues intermittent episodes began i.e. blurred vision dx unilateral pale optic disc, left forearm flexor/extensor without cause dx torn off bone etc, fatigue- normal blood work days/weeks of building could be burning no energy to get out type fatigue to lesser levels depending on daily physical activity, hot weather, water temperature etc. Worst episode Mid 40's dx diplopia, unilateral pale optic disc, unilateral rapid horizontal jerk with first time balance issues (fall backwards eyes closed, head lift eyes up, unstable uneven surfaces), gate (walking string puppet), speech (drunk slur, get stuck and elongating sounds) hand eye coordination off action, no no head tremor, cognitive - lost all nouns (family names, objects etc)....dx age related senile dementia due to chronic white and grey matter lesions but I was only 45. Took 8 months with incomplete recovery though definite improvements showing before the next episode happened, first summer after that episode the intermittent bladder incontinence started. Now early 50's, still experiencing everything mentioned above either episodic worsening or as an everyday issue, some neurological related diagnostic evidence ie clinical abnormalities Romberg sign, unilateral ankle clonus, visual abnormalities diplopia, unilateral nystagmus and pale optic disc along with healthy blood work ups, mental health and vascular ultrasounds etc Does it honestly sound like it could be MS as my GP and vascular specialist believe and if so, after all these years is it really worth the expense of getting diagnosed if it is likely too late to be of any help? Thank you in advance! Answer: A person with MS could certainly describe a history very similar to yours. It is definitely worth getting diagnosed and managed correctly if this is the case. I highly recommend you begin by seeing someone who specializes in MS and related conditions. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
My friend got some shots to help her MS around 4 years ago... She stopped taking the shots four years ago, but she is claiming her eyebrows are gone now because of the shots.... I'm curious to know if this is legit... I'm also afraid she maybe be on other drugs or worse illegal drugs and concerned if she is lying and needs help... Please advise. Answer: I can not think of a medication for MS that would cause someone to lose their eyebrows only. Most medications that cause hair loss would tend to affect scalp hair significantly. Good luck helping your friend. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I recently had an MRI of my brain. Can someone help me on understanding it? IMPRESSION: 1. No evidence of acute intracranial process. No evidence of acute ischemia or infarction. 2. There are scattered, nonspecific bihemispheric subcortical and periventricular white matter foci. The differential diagnosis includes early microvascular disease, focal demyelinating disease, remote inflammation/vasculitis and sequela of chronic migraine headaches. 3. No evidence of abnormal leptomeningeal or parenchymal enhancement. Answer: I should frame your message. This is probably the most common MRI report that we receive from radiologists and, you are correct, it is not very helpful. To really interpret your MRI findings accurately requires a better appreciation of your case. For instance "non specific white matter foci” means one thing in a 20-30 year old and entirely different thing is someone over 50. We would be happy to review your MRI scan but may not be able to shed further light on the diagnosis without knowing a lot more about your case. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
For the last several months i have had episodes of light headedness and fatigue as well as ringing in my ears. I had all the blood work and some cardio work up and still going to do a stress test. An example is that on Saturday I had a bad weak spell. On Sunday I was OK, on Monday I had a weak spell and on Tuesday I was OK again. On Wednesday Thursday the same thing happened, etc. I'm generally very tired with these spells but feel better thereafter. I don't have any other obvious symptoms. I have pressure in my head with some mild light headedness and ear ringing. I am 70 years old with a history of Meniers and TMJ as well. What do you think of these symptoms and MS? Thank you - Lou Answer: Lou, it is very difficult to answer your question without knowing more about your case. There is a very large differential diagnosis for lightheadedness and fatigue in MS patients. This is especially true of a 70 year old man with other medical problems such as Meniere’s disease. It could take several good doctors in different specialties to figure out the problem. While this can be related to autonomic dysfunction from MS, it is more often related to other common medical problems not related to your MS. Please keep in mind that this group of symptoms may be caused by common medications, often prescribed in elderly MS patients. These medications include drugs used to treat spasticity (e.g. Tizanidine), anticholinergic medications used to control urinary urgency (e.g. oxybutynin, vesicare, trospium ), drugs used to treat urinary hesitancy (e.g. flomax or hytrin), tricylic antidepressants used to treat pain (for instance, nortriptyline or amytriptyline) and narcotics. This can also occur with various blood pressure medication Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I'm a 48 year old male recently diagnosed with RRMS. I have not even started on a drug regimen. My question is this...why do I have RRMS when my symptoms are persistent? I had a numbness across my mid-section beginning 3 years ago which still remains. For about 4 months now when I move my head down or to the left I feel a numbness/tingling in my back and legs. This has not gone away. My MRI shows I have one lesion in my thoracic spine and one in my cervical spine and none on the brain. Spinal tap results indicated MS. But shouldn't these symptoms come and go and not be persistent if I have RRMS? Thanks. Answer: Relapsing remitting does not mean that symptoms disappear after a relapse; it only means that symptoms improve to some extent after a relapse. Otherwise, having MS would be no more severe than a case of the flu. The entire concept of relapsing remitting MS is even more complicated than this answer implies. For instance, we define a relapse as neurological symptoms accompanied by matched findings on examination both consistent with inflammatory demyelination that usually develops without improving over several days (minimum of 24 hours) before stabilizing and improving to some extent, usually over several weeks. So what if you develop abnormal symptoms consistent with demyelination or scaring in your nervous system without evidence of inflammation? These are usually odd or abnormal sensations without an accompanying abnormality on examination. These symptoms would not be considered a relapse and tend to be more persistent, although they still fluctuate from day to day. The whole point is that areas of inflammatory demyelination rarely recover completely and can often cause recurrent, usually intermittent symptoms over time. I hope this helps. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
Can I return to Avonex from Aubagio medication directly? Answer: Deciding which disease modifying therapy to use is a very individualized choice. Medically, a person can switch from aubagio to avonex, but whether or not someone should would be based on what caused the switch to begin with and what is causing a switch now. Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Ambulatory Care Department of Neurology and Neurotherapeutics Director, Transverse Myelitis, Neuromyelitis Optica Programs Co-Director, Pediatric CONQUER Program UT Southwestern Medical Center Childrens Health Dallas, Texas Tel 214-645-0555 Here is My Question:
I have tingling in my foot - unilateral - which comes and goes - and has been with me since 2012 but significantly worse, as in every day occurrences now. I also have numbness in that foot especially where foot joins ankle and I catch my left foot. I have had optic neuritis and have nonspecific brain lesions. I am being told I should have a spinal injection at L4/5 (no back pain, no radiating pain but bulging disc at L4) as diagnostic measure. The tingling increases and extends with heat. After a long hot shower the entire leg tingles and feels weak. With the numbness a three inch laceration showed no reaction at all to application of rubbing alcohol - no pain. Do I go with the L4/5 spinal block or request new spinal mris (dated by 3 years)? I do not think this is sciatica because I have no back pain and some nonspecific brain lesions. How to proceed? Thank you. Answer: Unfortunately, we cant give specific advise for how to manage this situation, but in general it would be highly unusual for someone to have a sensory loss from a compressed nerve, but no pain. Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Ambulatory Care Department of Neurology and Neurotherapeutics Director, Transverse Myelitis, Neuromyelitis Optica Programs Co-Director, Pediatric CONQUER Program UT Southwestern Medical Center Childrens Health Dallas, Texas Tel 214-645-0555 Here is My Question:
Is there a connection between MS and total loss of taste and smell? Answer: http://www.healthcarejourney.com/physician-blog/loss-of-hearing-smell-or-taste-in-multiple-sclerosis Question:
If someone has diagnoses of both MS and lumbar spinal stenosis and has heavy tingling of whole leg in the shower which subsides after cooling, is the tingling caused by the MS or the stenosis? Answer: The tingling of your leg after a hot shower could be due to either condition but more likely caused by the MS. The exception would be if you develop tingling in this leg with walking, especially if this is causing discomfort, even when it is not hot. In this case, everything could be related to the lumbar canal stenosis. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
How should I transition from Tysabri to Ocrevus, now that it has been approved? I have been on Tysabri for over 6 years and am JC positive. I have been told by my neurologist that there is currently no information on how this transitions (e.g., time between infusions) should be safely accomplished. Any information appreciated. Answer: How to transition from Tysabri to Ocrevus depends on a number of circumstances:
Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I was diagnosed with MS about four year's ago. About one year ago I had a relapse and have since been on Rebif. About a month ago I got pains in one leg on the right side of my body as well as terrible headaches. When we spoke to my neurologist she said don't worry it will pass. I must just take pain pills. I have now again been battling with a headache for about a day. Is that normal or could that be a sign of a relapse? Answer: Headaches and neuralgia type pains are rarely caused by an MS relapse but can be a symptom of MS. You may require more specific management of these pains. Ask your neurologist for an appointment to fully diagnose the cause of these headaches and initiate an effective treatment. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
Is there anything online (games, virtual reality(?)) that my family & friends could go to where things like typing are simulated to 'act' like someone with MS? I found a site about a year ago where the user could try a typing test and a virtual 'keep your balance' test that would simulate what it's like to do these things with MS. For example - you hit all the right keys, but it types a garbled sentence... I can't find it anymore? I just would like to have a resource where my family can at least somewhat experience what I do on a daily basis. Answer: I am not aware of any sites on line that serve this purpose. If you do find any, please let us know so we can share the information with our community. Thanks Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I have been on Gilenya for almost 18 months now and I want to use Inderal for social anxiety in certain occasions. I know that both of them could cause slow heart rate but they say that if you use Inderal after being stable on Gilenya and in certain occasions it will not cause you harm. Is that true? Answer: There is no contraindication to the use of beta blockers in people who have been on Gilenya for over a month if, 1. You have no contraindication to the use of propranolol 2. You do not have any cardiac conditions or problems with your heart rhythm The fact that you will only use the propranolol intermittently should provide even further safety If your doctor has no problem with you using propranolol (same thing as inderal), then I have no concerns based on what you have told me. Make sure you consult with your doctor on this. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego |
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