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Here is My Question:
How do you treat radiology isolated syndrome? Especially the muscle tightness. Also, is this the same as CIS? Answer: Radiographically isolated syndrome, by definition, means that there are no symptoms that can be attributed to MRI findings. The MRI was obtained for reasons other than neurologic symptoms from MS but finds lesions consistent with demyelination. Treating this condition is a very personal decision based on MRI patterns and possibly CSF findings. Symptoms that need management are usually ascribed to other conditions and managed according to those guidelines. CIS is a condition where there has been a documented clinic event. 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 Here is My Question:
My daughter has MS and I have small fibre neuropathy. Is this genetic? Answer: Neuropathies can be classified as hereditary or non-hereditary, so it is possible for a neuropathy to be genetic. A neurologist should do a history, physical and determine which tests for neuropathy causes should be ordered. 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 have been on Copaxone for 18 years, since my initial diagnosis. I have had no exacerbations but have managed the weakness and balance problems that were present with the initial exacerbation. I am considering a change to Tecfidera, only because I am tired of injections and have read that the newer therapies are more effective. However, I am a bit frightened with what I read regarding JC Virus. Am I silly to be thinking of a change when I have had no exacerbations? thanks! Answer: The decision to change therapy is a very personal one. There is no right or wrong answer. After having such a long period of remission on any medication it would be reasonable to have hesitation about switching. There is risk to all medications and there are risks to Tecfidera, so those risks have to be weighed against the inconvenience and pain associated with injections. A careful conversation with your treating physician is critical and a plan to monitor for any disease activation after switching is warranted. 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:
My son was diagnosed with MS 3 years back. He did not take any medication and had no problems. Three weeks ago he got an electric shock while starting a generator. This triggered symptoms like numbness in his leg and arm. He just got out of the hospital after a 5 day course of steroids. His hand is still short weak. His MRI showed 2 new active lesions. He is 20 years now. Is it wise to start injections? Answer: In general if someone has MS and is having ongoing relapses (regardless of cause) then we do recommend going on some form on disease modifying therapy. Which one is up to the individual patient in consultation with their treating clinician. 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 Here is My Question:
I've been on Copaxone for 1 year recently diagnosis with MS. I had an MRI and found 2 more lesions with no symptoms...how bad is finding 2 more within a year? I have changed my meds to Tecfidera. Answer: This is a hard question to answer as care definitely has to be individualized, but one key is to ensure that the MRI data is correctly interpreted relative to starting the copaxone. For, example, copaxone takes 4-6 months to “kick in” so, if a MRI was done before copaxone, then the medication was started and then one year later a new MRI was obtained that showed new INACTIVE lesions, there would be know way to know if the lesions formed before or after copaxone had ‘kicked in’. Thus, it might not represent copaxone failure. If, however, MRIs were obtained after starting copaxone and then again a year later and despite the copaxone there were new lesions, it would suggest that someone was a suboptimal responder to copaxone and changing medication would make sense. 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 have just been told my vitamin D level is very low. Are there any underlying health conditions that could cause this? Answer: Good question! We don't think so! Most people have developed vitamin D deficiency over the last 20-30 years based on changes in our diet and our environment. It is probably a reflection of a world and not a malabsorption issue. If there are other concerns that would raise a question of malabsorption we always recommend talking to your physician, but isolated low vitamin D is now (unfortunately) very common. 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 Question:
At night, simple tasks get harder and my memory gets worse. Why? Answer: Cognitive changes, including memory issues and slower processing are common in MS. Patients can have difficulty with multitasking and word finding. These cognitive challenges can be variable from day to day and there can be “good days and bad days”. Patients may also have times of day that are more challenging than others. Critical to this issue is to get evaluated by your health care provider to ensure there are not any extraneous factors that could be contributing (poor sleep, dehydration, dietary/nutrition, medication side effects, etc.) 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 have a question from my pediatric MS group for you : For our kids that have lingering pain post attack: Is it possible that the kind of intense PT/OT that children who have been diagnosed with (AMP) Amplified Musculoskeletal Pain receive be beneficial to our MS kids who experienced post attack pain? Answer: Unfortunately there is no good data for this technique in pediatric MS. We encourage patients to have a detailed exam with their neurologist and physiatrist to determine the cause of the pain (neuropathic versus musculoskeletal versus spasticity) as this can dictate the best course of action. 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:
Do you have any suggestions for those of us suffering from Lhermitte's sign? Answer: There is no specific treatment for lhermittes phenomena. I would recommend discussing options with your neurologist that are typically used to treat neuropathic pain, but this requires a lot trial and error to find something that works. 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:
Has Tecfidera been used in 16 year old girls? Answer: Multiple clinics have used this medication off label (meaning in a fashion not approved by the FDA) in girls under the age of 18. 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 am in my early 60s, stopped taking Avonex 7 weeks ago and will start taking Aubagio in the future. Should I get a shingles vaccine during this interim period of being off any MS medication? If so, how long should I wait before starting Aubagio? Answer: We recommend discussing specifics with your treating physician, but in general we do not recommend live vaccines while on Aubagio. We recommend, in general, at least one month between the last dose of a live vaccine and the initiation of a medication that significantly alters the immune system. 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:
Hello, I am a 31 yr old male diagnosed with MS last year. I was also diagnosed with Erectile Dysfunction and low testosterone - my MS Specialist told me that it is related to MS. I'd like to know your opinion on this. Also, myself and my wife are eager to start our family, but due to these issues we are not able to. I saw a urologist last week and he recommended starting Clomid (50mg -3times a week) along with Cialis as needed. I would like to know if Clomid has any relation to a MS relapse or makes MS symptoms worse? Right now, I have very mild MS symptoms like tingling and slight numbness. I'd love to start Clomid and start trying, but I am just worried about the MS symptoms getting worse with Clomid? Thank you in advance for your response. Answer: While ED can be related to multiple sclerosis there are lots of potential causes that require a workup and examination from a urologist. If this is indeed found to be a cause of ED, there are a variety of approaches in terms of management. The use of Clomid can be justified and there is not a known contraindication. 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 Question:
I started Aubagio two months ago and before that I was using Avonex. I have also started to walk for about 45 minutes a day. I feel kind of numbness at my left side toes. Is this related to exercise? Just MS? Is Aubagio as effective as Avonex? Answer: Anytime you have new symptoms that are concerning, please check with your clinician. In general symptoms can be a sign of a new exacerbation OR they can come and go based on prior damage that has occurred. Sometimes, symptoms such as numbness are related to things other than MS. In most instances, the symptoms are NOT a sign of new inflammation, but your clinician can guide you on whether testing will be required. In terms of comparing Aubagio and Avonex we have limited data. At a population level they are probably equivalent, but there will be some people who respond to one drug and not the other. Careful follow up is needed on any disease modifying therapy to determine if it is working for you. Benjamin M. Greenberg, MD, MHS Director, Transverse Myelitis, Neuromyelitis Optica Programs Director, Neurosciences Clinical Research Center Co-Director, Pediatric CONQUER Program UT Southwestern Medical Center Childrens Health Dallas, Texas Here is My Question:
I was wondering if anyone could comment on the risk of Autism or ADHD associated with children born to Mothers with MS. I have heard a medical professional say there is an association, but I am curious to know your thoughts. Thank you!! Answer: There are mixed studies on this topic. Some studies have found an increased risk of any developmental disorder (including autism and aspergers) in children of mothers with one of many autoimmune disorders (not just MS). Others have found no relationship. Some studies have seen an association when there are any family members with autoimmune disorders (not just the mother). In general, when studies have found an increased risk, they have been quite low. More research is needed on this as the mechanism (if an association exists) remains unclear. Benjamin M. Greenberg, MD, MHS Director, Transverse Myelitis, Neuromyelitis Optica Programs Director, Neurosciences Clinical Research Center Co-Director, Pediatric CONQUER Program UT Southwestern Medical Center Childrens Health Dallas, Texas Question:
Are MS patients good candidates for interstim bladder pacemakers? My new gynecologist wonders why my urologist never recommended this to me. Answer: In general the bladder stimulators have been helpful to many MS patients, but a large number have reported a ‘wearing off’ of the benefit over two years. Thus, several urologists have cut back on using them. Benjamin M. Greenberg, MD, MHS Director, Transverse Myelitis, Neuromyelitis Optica and Pediatric Demyelinating Disease Programs Director, Neurosciences Clinical Research Center UT Southwestern Medical Center Childrens Medical Center Dallas, Texas Here is My Question:
I was on the Cleveland Clinic website since I will be going there later this month (the Mellen Center). My problems have been cognitive and I had a small relapse few short months ago and noticed memory, ear noises and a strange smell, plus other cognitive issues gotten a little worse. I noticed on their site that Interferon beta-1a (Avonex) and Interferon beta-1b (Betaseron) supposedly help or at least "slow" the cognitive problems getting worse? I was on Rebif initially but had to stop because of my liver. Does that mean I cannot take an interferon at all? At least, that's what I was told. I'm concerned about the cognition problems getting worse. They are very difficult to deal with sometimes. I'm really hoping the Mellen Center can help me with that! Also, I was given Aricept but quit taking it (I can't even remember why I did!) I looked it up thinking maybe I should try that again and there were so many side effects! Am I being silly worrying about those? I have almost burned our house down more than once. I'm constantly losing things, etc, and I get things so confused (dates, etc). I could go on and on but won't bore you with all that. I mainly want to know about the interferons (I am presently on Copaxone which my neurologist is very happy with) and Aricept. Do you think Aricept could help? It was in 2012 when I was diagnosed that I was given this medicine. I think I was overwhelmed at the time and decided I didn't need it. Perhaps I was wrong. Answer: While we cannot make specific recommendations we can comment in general about the issues of cognition and MS. Cognitive changes are unfortunately common in MS and can present in very subtle ways. There can be responders and non-responders to any disease modifying therapy. We hope that any medication used to suppress MS would stop progression of symptoms, including cognition, but each patient should be monitored individually. While medications like Aricept can be tried, it is routine to obtain formal neuropsychological evaluations and look for co-morbid issues that could effect cognition and be reversible. For example, patients with interrupted sleep can have significant cognitive difficulties. Sometimes, cognitive changes are side effects of medications. All of these issues should be taken into account by patients, neurologists and neuropsychologists. Benjamin M. Greenberg, MD, MHS Director, Transverse Myelitis, Neuromyelitis Optica and Pediatric Demyelinating Disease Programs Director, Neurosciences Clinical Research Center UT Southwestern Medical Center In regard to your symptoms, here are a few blogs you might want to read: http://www.healthcarejourney.com/hearing-or-smell-or-taste-changes.html http://www.healthcarejourney.com/cognitive-dysfunction.html Here is My Question:
My diagnosis began with Transverse Myelitis and now Relapsing Remitting MS. Took many drug alterations to alleviate symptoms and have been on drug cocktail for many years including Avonex, Baclofen, Lyrica and Amantadine. Can Myelitis occur again? Symptoms worsening again in addition to severe contractures of muscles in lower extremities. Added Magnesium and Klonopin not working. Answer: Anyone with multiple sclerosis can have relapses (sometimes called exacerbations, attacks or flares). Some of these relapses can be inflammation in the spinal cord – called myelitis. Differentiating between a new relapse and a recurrence of old symptoms can be difficult. If you have new symptoms that have never been experienced before, you should contact your clinician to determine if an evaluation for a relapse should be pursued. If you have recurrence of worsening of symptoms in a part of your body that has had prior symptoms, you may be having a pseudo exacerbation. These are very common and are not caused by new inflammation. They can be caused by changes in body temperature, lack of sleep, stress or infections. If symptoms recur or worsen, contact your clinician to seek out the best options for therapy. Benjamin M. Greenberg, MD, MHS Director, Transverse Myelitis, Neuromyelitis Optica and Pediatric Demyelinating Disease Programs Director, Neurosciences Clinical Research Center UT Southwestern Medical Center Childrens Medical Center Dallas, Texas Here is My Question:
I have MS and was diagnosed in my 30's. I am the mother of four children, the youngest is a set of identical twins. One of the twins was diagnosed with pediatric onset MS at the age of 15, from what I am reading it appears that the other twin has a statistical risk of MS of around 30%. Is that correct? Answer: Yes, you are correct. You can read a previous blog I wrote regarding fraternal twins and the risk of the second twin being diagnosed with MS http://www.healthcarejourney.com/q--a-for-virtual-ms-center/one-twin-has-multiple-sclerosiswhat-are-the-chances-that-the-other-will-too With identical twins, the risk of the second twin being diagnosed is higher than with fraternal twins (5-15% depending on the study read for a fraternal twin vs 30% for an identical twin. Here is a blog written by Revere Kinkel MD that addresses this issue: http://www.healthcarejourney.com/q--a-for-virtual-ms-center/what-is-the-risk-of-passing-ms-to-a-child Please note that this data is based on limited size studies, and the majority of siblings (even twins) do not develop MS, but discussing options with your neurologist is reasonable. If you don't know about it already, you might also want to visit our Pediatric MS page http://www.healthcarejourney.com/pediatric-multiple-sclerosis.html which has a link to the Pediatric Multiple Sclerosis Alliance (PMSA), a non-profit organization for parents and caregivers of children with MS. Benjamin M. Greenberg, MD, MHS Director, Transverse Myelitis, Neuromyelitis Optica and Pediatric Demyelinating Disease Programs Director, Neurosciences Clinical Research Center UT Southwestern Medical Center Childrens Medical Center Question:
At what age do doctors generally start giving the kids pills for MS as opposed to injections? Answer: There are no guidelines on this and all medications used in pediatric MS are used “off label”, meaning none have been approved by the FDA for pediatric MS. Each case is considered individually and many aspects of the child’s history must be taken into account. Thus, there is no specific age at which oral medications are uniquely considered in children. Benjamin M. Greenberg, MD, MHS Director, Transverse Myelitis and Neuromyelitis Optica Program Director, Pediatric Demyelinating Disease Program Department of Neurology and Neurotherapeutics Department of Pediatrics Cain-Denius Scholar of Mobility Disorders University of Texas Southwestern Medical Center |
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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