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I was on Aubagio, then stopped because of high blood pressure (being treated for that still). Had an aneurysm in 2015 and worry about that. Anyway, my new neurologist says Aubagio cannot cause that. Not from what I read. He wants me to start Tecfidera, or at least consider it. But I'm thinking, shouldn't Aubagio be removed completely from my system before starting anything else? Seems to me, it is still in my system if I still have the high blood pressure. I never had that before Aubagio. I'm afraid of starting something else with that still in me! Answer: I always use the elimination protocol when stopping Aubagio. The protocol is cholestyramine 8g by mouth three times a day x 11 days. I also recommend checking a teriflunomide/leflunomide level after the elimination to ensure the Aubagio is effectively removed. Rarely, I have had to repeat the elimination protocol (in every case, the second round removed the Aubagio). A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente KP Fontana and Riverside Medical Centers
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Here is My Question:
Memory beginning to fade, desire to continue walking becomes a healthy obsession...what can a loving spouse do to help? Answer: We would suggest contacting your local chapter of the Alzheimer’s Association or local Powerful Tools for Caregivers classes. The Family Caregiver Alliance also has some excellent resources and webinars. If you use the search box in the upper right hand corner of this page and type in 'caregiver' you will find lots on this site in regard to caregivers. Here is a link as well www.healthcarejourney.com/apps/search?q=caregivers Here is My Question:
Does UCSF infuse Tysabri? Answer: Yes all academic MS programs and most community neurology programs infuse tysabri in either their own infusion center or an affiliated infusion center. If you contact Biogen through their TOUCH program, they can help you find the nearest infusion centers 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 any connection between MS and epilepsy? Answer: www.healthcarejourney.com/q--a-for-virtual-ms-center/is-there-any-connection-between-ms-and-epilepsy Here is my question:
How is it best to manage foot drop? Answer: We have a lot written on this website about foot drop. Whenever you want to know something about MS, first try searching in the search box (upper right corner of this screen). If you type in 'foot drop' you will find a wealth of information. Here is our main symptom page for foot drop www.healthcarejourney.com/foot-drop.html Good luck 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:
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 mother went blind in her eye for a few weeks after giving birth to me, and this was how she was diagnosed with MS. I have always wanted an expert opinion on whether the MS was caused by my birth, or whether the MS would have been there, dormant, beforehand. I don't feel like there is a clear answer I can find on the internet anywhere and I wonder if you would be able to answer it or point me in the right direction. Answer: MS flare ups are not caused by birth. However MS usually improves during pregnancy (less symptoms or relapses) and there is an increased risk post partum (in the months following a birth) of MS relapses flaring up. MS is an autoimmune disease and the hormone fluctuations that occur during and after pregnancy have an effect on the course of the immune system and MS. Benjamin Osborne, MD Associate Professor of Neurology and Ophthalmology Director, Neuromyelitis Optica (NMO) Clinic Director, Neuro-Ophthalmology Clinic Associate Director of the NIH/Georgetown Neurology Residency Program Medstar Georgetown University Hospital 3800 Reservoir Road, NW 7PHC Washington, DC 20007 Here is My Question:
Under what circumstances is Trendelenburg sign / gait seen in the MS setting? Does it ever occur with footdrop? In a patient catching toe when walking, is the catching possibly related to the hip drop? What would cause Trendelenburg sign if related to MS? What are the differential diagnoses? Answer: The Trendelenburg sign is a term used to describe a type of gait deviation. It can be seen in anyone, and is associated with weakness of the hip abductor muscles. It can occur with foot drop, but both can occur independently of each other as well. A Trendelenburg sign is not the cause of a foot drop. Foot drop either occurs due to weakness in the tibialis anterior muscle, spasticity of the plantarflexors (calf muscles) or sometimes can be more pronounced with weakness of the hip flexors (not abductors). Differential diagnosis would be muscle strength testing (MMT) of the lower extremities, to determine which muscle groups are weak. Sarah Frank, PT, DPT, MSCS Outpatient Rehab Mt. Sinai Rehabilitation Hospital 490 Blue Hills Ave. Hartford, CT 06112 Here is My Question:
Having MS for almost 30 years, I know very well the importance of PT, exercising and stretching. Due to some health problems I have not been doing my calf stretches. My calf muscles are very, very tight. I was just getting back to my stretching routine, when I started getting pains in my right inner upper leg. It is now also in my lower back. Can this be from lack of stretching? I have had tests, and it is not my hip nor a bladder-kidney infection. Can it possibly be muscle related from tightness ? Thanks Answer: The pains you are feeling can definitely be related to muscle tightness in the muscles of the inner thigh and in the back; especially if you spend the majority of the day sitting. Also, if you are altering the way you walk because of the stiffness in your legs, that could also be a potential cause of the increase in tightness. If you are someone who has spasticity, you may also be experiencing an increase in spasticity to those regions. If any of these are the reason for your pain, stretching will help! Sarah Frank, PT, DPT, MSCS Outpatient Rehab Mt. Sinai Rehabilitation Hospital 490 Blue Hills Ave. Hartford, CT 06112 Here is My Question:
Which MS drugs are not immunosupressants? Answer: Defining what is and isn't an immunosuppressant is actually not 100% agreed upon. The medications that do not have a reported increase risk of infection are Copaxone, Glatopa and interferons. 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 received a diagnosis of MS 1995 with optic neuritis and balance issues. Medrol and prednisone helped resolve the issue. I did not have another issue until 2003 (same symptoms). My MRI confirmed it was MS and I then began Rebif therapy 44mg (3 x week). I have been on Rebif from 2003 till 2017. In 2016 I was diagnosed with Crohns disease and was started on Imurran 50mg. My original MS doctor retired and my new doctor (experienced & thorough) went through my entire MS history. He ordered MRI ultra w & w/out for cervical, thoracic & lumber due to some numbness in areas right side body and also did a nerve conductor study. He requested any DVDs showing past MRIs. Also he's having my antibodies checked to see if titers >20 and said that would determine if he would take me off Rebif...even though I haven't had any more flare ups...He said high antibodies would effect Rebif efficacy. That same week my gastroenterologist is trying to decide whether to put me on Entivo (infusion) or keep me on Imurran (Which he reduced 50 to 25 this past weeks visit....I'm totally frightened of the 4 big ( biologic infusions) especially after having researched side effects!!! My MS doctor said if the gastroenterologist keeps me on Imurran then he will consider me on Copaxone possibly..................Finally.................My question is why would I have to change to any other meds since I'm doing well on these...? And the "Big Guns" have many more side effects !!! Plus...I had large colon removed 2004 due to Ulcerative Colitis & rectum removed in 2013 to avoid any possibilities cancer...I've had my stoma removed in 2004...&...gallbladder removed 2011 due to major pain (stones)........Seriously.......All things considered..........I feel very Blessed continuing normal day activities in my retirement years.....(retired at 59 now 66)....and feel that if I was to have to change to an infusion I would have terrible side effects to deal with !!! I'm well aware that meds are contingent on doctors findings but do not won't infusion chemo type meds........Thanks for your response & sorry for lengthy explanations........TRP Answer: Dear TRP, You obviously have a very complicated medical history. I cannot offer you medical advice but I may be able to offer some insight as to why your physician(s) want to change your medications. While it sounds like you have been doing quite well on rebif therapy for your MS, if you are started on a new medication for your Crohn’s disease, there is a potential risk of drug-drug interactions. For example, being on a combination of imuran or entyvio with rebif could increase the risk of side effects, in particular weakening of your immune system which could lead to an increased risk of infections. Your neurologist may feel that copaxone does not have as much of a risk in combination with either the imuran or entyvio. Finally, another thought to consider is whether you need to be on any disease modifying therapy for your MS at all. You are now age 66 years old and you report that you have had inactive MS for the past several years. If your MRI scans have been stable with no new lesions over the past five years and you have not had any new MS relapses over the past five years, you could consider discontinuing the rebif and not replacing it with any medication. This is a complicated decision however that you would need to discuss further with your neurologist. There may be other considerations your neurologist is taking into account that I am not aware of and I recommend you follow up with him/her to discuss this further. Sincerely, Benjamin Osborne, MD Associate Professor of Neurology and Ophthalmology Director, Neuromyelitis Optica (NMO) Clinic Director, Neuro-Ophthalmology Clinic Associate Director of the NIH/Georgetown Neurology Residency Program Medstar Georgetown University Hospital 3800 Reservoir Road, NW 7PHC Washington, DC 20007 Here is My Question:
Should I start Tysabri with JCV index of 2.21? I am 30 yr old caucasian male, I was diagnosed sept 2016 with MS. I had JC index of 1.82 and declined to start Tysabri or any meds. Jan 2017 2 new T2 lesions on brain, 4 total T2, now a JC index of 2.21. I am willing to start meds now, Tysabri for 12 months is what's being recommended by my nuero. Her argument against other meds are that they are not as effective and we need to stop new lesions. Are there any other meds you could recommend that are effective but not as risky for PML?? Thank you!! Answer: I agree with the decision to treat your MS (there are multiple blog posts on this site that detail the benefits of treating and treating early for MS). The choice of disease modifying therapy (DMT) can be a little complicated and comes down to how aggressive your MS really is (which you allude to in your question). Other considerations depend on certain prognostic factors of your MS. Male gender tends to have a more difficult disease course than women (on average). Other considerations include a history of motor attacks (ie, weakness or clumsiness), frequent and recurrent attacks early on, presence of spinal cord or brainstem lesions, etc. These are poorer prognostic factors which can argue for use of a highly effective therapy such as tysabri. However, your risk for PML is higher than an individual with negative JC virus antibody titers. Because I do not know you and haven't had the opportunity to examine your or review your imaging, I cannot realistically suggest a different course for your MS than what has been suggested by your neurologist. If you are a candidate for a highly effective therapy, the off label use of rituximab 500mg would be an option for you. This is very similar to the soon to be approved medication called ocrelizumab. The estimated risk of PML is ~1:25,000 (based on treatment of rheumatoid arthritis patients on rituximab). Your risk with Tysabri for PML is much higher than this. I'd suggest reviewing options with your neurologist as there are 15+ FDA approved therapies now. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente KP Fontana and Riverside Medical Centers Here is My Question:
Is there any help for bladder incontinence? I have tried some meds, Detrol and Oxybutinin, but it didn't slow down. Constant trips to the restroom, plus wearing much protection, is irritating and tiring. Answer: Yes there are many relatively new solutions for bladder incontinence 1. There are new medications like Myrbetriq 2. There are intravesicular botox injections for patients with Detrusor sphincter dyssynergia 3. There are special surgical procedures like appendicovesicostomies You need to see a urologist with expertise in neurogenic bladder problems. Talk to your doctor. Good luck 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:
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:
What is your opinion of using hook worms or other parasites to treat MS ? Answer: The use of helminths to treat MS has been considered for many years and completed a phase one study several years ago. There is ongoing research looking to understand its potential use. 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:
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 |
PLEASE NOTE: The information/opinions on this site should be used as an information resource 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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