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Here is My Question:
Hello....I'm a 42 year old female with RRMS. I'm currently taking Plegridy after being on both Copaxone and Aubagio. The past several injections, I've noticed a great change in my emotional state - I'm upset more easily, depressed, and have had feelings of a horrible sense of panic. I'm going to speak to my neurologist about switching to another DMD. My question is, how long can these emotional changes last? It's been a week since my last injection and I still feel intense panic and sadness. Is there an OTC option to manage these symptoms? I feel like I'm going crazy. Answer: All interferon-beta preparations (plegridy being one) can aggravate depression. I'd recommend speaking with your neurologist. Mild depression can be managed without medication in some instances, but typically either treatment for depression may be indicated or you may need to come off the interferon-beta. I'm not aware of an OTC they would address your specific situation. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Help! I'm on Plegridy, and have noticed my last few injections have come with intense moodiness. This past shot, I had the same thing - moodiness - but it also came with heart palpitations and a feeling of intense panic. My left arm is burning and twitchy. How long will this last?? Answer: This is definitely something to discuss with your doctor. There can be side effects from interferons, but most are manageable with premedication. Rarely, we have to consider a change in medication, but a thorough review with your doctor is definitely indicated. 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 was diagnosed with MS in 2001. I have had 2 children and was on Copaxone for 10 years. Altered sensation in both feet and legs to knees began while on Copaxone. Had a small spinal lesion that causes altered sensation in my right forearm and hand. I switched to Tysabri for a little over a year because I became JC positive. I have been on Tecfidera for a few years now and my neurologist wants me to switch to Ocralizmab. My head is full of lesions, but no new enhancements on MRI while on Tecfidera. I am still employed full time as a PT in the hospital setting. It is now more difficult to walk I can feel my legs having difficulty firing and I don't think I could run to save my life. My question is do you think I should continue Tecfidera or start ocralizmab? I'm scared the side effects may make it harder to continue working as a PT in the hospital setting. Again, I have a bunch of lesions, but no new enhancements on MRI. Answer: You may be transitioning to a secondary progressive stage (not sure). Ocrelizumab or rituximab are good options and have more data to support their use to slow down progression (particularly if you still are at risk of inflammatory MS activity). Experience to date suggests that your risk of PML is greater on Tecfidera than the b-cell depleting biologics. Moreover, side effects are far more common and pervasive on the oral therapies. I'd suggest speaking with your neurologist to share your concerns but also to explore why your physician is really recommending a b-cell biologic based on your particularly history. From a work standpoint, the infrequency of the infusions would pose minimal intrusion in your work schedule. A. Scott Nielsen MD MMSC Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I have several symptoms all pointing to MS and have had an MRI that was clear. I am scheduled to have a cervical X-ray today. My understanding is that an X-ray cannot detect spinal lesions. If this is correct, what could my PCP be looking for? Over the past 8 months I have different symptoms come and go but since Feb I have been having double vision, problems intermittent with swallowing, severe fatigue, tingling burning in both hands, left hand weakness, muscle aches/weakness, short term memory loss and problems with saying the wrong words. Balance issues. I am on b12 shots, vitamin D , tamadol for psoriatic arthritis, Lexapro, levothyroxine for hypothyroidism and Zyrtec. Full eye exam yesterday shows my eyes are healthy, but one test did show both eyes move to focus. Being referred to a neurogist. I feel like I am crazy at times but my symptoms are real. Can you have MS with no visible lesions? Help needed in NC, :) THANK YOU Answer: It is very rare to have MS with a normal MRI scan of the brain. Depending on when your first MRI scan was completed, it may be worthwhile having another MRI scan repeated; I recommend you discuss this with the neurologist who you are going to see. You are correct that the xray will not be able to detect lesions due to MS but it can pick up other problems in the neck such as arthritis. 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:
I've had MS for 10 years now and made the mistake of going off MS meds for about 6 years because I felt so "normal." I am now suffering from the effects of "lesion burden." It turns out that I gave myself permanent issues while mistakenly believing that since I was having no symptoms, medications were optional - never do this! I am about to begin Plegridy. I'm wondering if there might be improvement in my current condition from from taking Plegridy? I have weakness in my right side with occasional imbalance and often times need help walking. I'd absolutely love to just walk without the issues. I'm okay if I am no longer able to be a gym rat - just normal function would work for me! Also, is it possible to continue to work while dealing with the side-effects. I haven't met a med yet without succumbing to the side-effects! Hopefully, I won't have problems, but it'd be the first time if I didn't. Thank you Answer: Let's not confuse disease modifying therapy (i.e., Plegridy) with symptom management. All DMTs work by mitigating future inflammatory damage and do not repair previous damage. That sums up your experiment off therapy. I have previously blogged on the subject which can be found here: Sent from my iPhonehttp://www.healthcarejourney.com/physician-blog/a-commonly-asked-question-about-disease-modifying-therapies-for-multiple-sclerosis I'd suggest using the symptoms tab on the website to explore potential options to address your symptoms. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Aubagio can lower lymphocyte counts but less than 10 % of patients will experience a lowering of their counts below normal (0.8)
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:
Do you have any information you can share about the new McDonald criteria? When will the release occur? Will the new criteria, which apparently focus on preventing misdiagnosis, make it a more difficult, longer process for those "in limbo"? Answer: New MAGNIMS consensus guidelines were published in March 2016 clarifying the MRI criteria that should be used to diagnose MS. This was meant to decrease over diagnosis of MS by inappropriate interpretation of the older MRI criteria. I am not aware of any other updated diagnostic guidelines at this time. 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 was diagnosed with MS in 2005. I have weakness in both legs and right arm. I took Tysabri for 13 months and stopped when JCV was positive. Took Aubagio for 6-8 months and stopped. Went back on Tysabrii with JCV index of 0.65. My JCV is now 1.54 with total of 39 infusions. I want to go on Ocrevus and would like to know the washout period for Tysabri and the risk of PML after starting Ocrevus. Answer: I typically give rituximab/ocrevus 4 weeks after stopping Tysabri in order to prevent the ~50% chance of MS rebound disease activity (due to coming off Tysabri). The risk of PML for the 6 months after stopping Tysabri is roughly the same as it is for you on Tysabri currently. As you are probably aware, there has been 1 case each of PML on ocrevus and rituximab, but in each of these cases, the PML occurred within that 6 month window of stopping Tysabri (this leads me to believe the culprit is the Tysabri rather than these b-cell depleting biologics). A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Are Tecfidera and Plegridy equally effective? Answer: There is no head to head comparison clinical trial to answer this question. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question: I am a 62 year old female and was diagnosed at 49. I’ve been quite stable and the disease has not progressed to the point of serious disability. However I do have painful muscle spasms in my back and feet, incontinence and fatigue. My legs are weak in that I cannot walk for a long distance and certainly have difficulty with uphill and stairs. My left leg is worse and my left foot too. That foot often feels painful but numb and heavy. Also my left leg, where the buttock meets the upper thigh, is often in pain sometimes with burning pain down the back of that leg. I walk a lot and go to the gym to strengthen my muscles but can only make so much progress. I would like to get some aerobic exercise but its difficult because walking is not easy. Can I make my legs stronger or is it impossible because its from nerve damage? Is there much I can do about the spasms - I’ve tried drugs and they don’t help me. Is the pain due to muscle spasms or is it likely nerve pain? Answer: It is hard to determine the cause of your pain without examining you. You will need to address this with your MS specialist. I can tell you that lack of movement and stretching with decreased walking will worsen spasticity and stiffness over time. It is possible to exercise, even if you spend most of your time in a wheelchair. Please check out the link to Daryl Kucera’s online exercise classes: msforward.org 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:
Are neurofeedback and vestibular therapies used in addition to disease managing therapies? If so, how do they help? Answer: Neurofeedback is only used in research protocols at this time. Vestibular rehabilitation techniques may be useful for postural stability, balance, vertigo and dizziness and even fatigue. All are considered symptomatic treatments not disease modifying therapies. 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'd like to quit my medications, I've not had any new or enhancing lesions, no changes on my MRIs in the past 7 years. I've been on some form of DMT for the entirety of my diagnosis in 2002, and have had relatively little disease progression. Would it ever be advisable to just even take a break from meds? Answer: The decision to continue or discontinue an MS DMT is often difficult to make and requires full knowledge of the details of your disease. Please discuss these details with your MS specialist to make this decision. If you do decide to discontinue your DMT, it is important to continue monitoring your condition with quantitative performance measures (things like 25 foot walking time, Timed up and go test, 9 hole peg test etc.) and regular MRI scans. We would obtain an MRI 6, 18 and 36 months (then at 5, 7.5 and 10 years) after stopping a DMT, but your MS specialist may have a different protocol. How the MRI is done is also important but beyond the scope of this response. Good Luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego 200 West Arbor Dr Medical Offices North MC 8687 San Diego, CA 92103 619-543-3500 (Clinic phone) Here is My Question:
If I stopped taking Tecfidera abruptly what would happen? Answer: Abruptly discontinuing Tecfidera is not an issue for concerns around rebound disease activity (which is a problem with Tysabri and Gilenya, for example). Although you eliminate Tecfidera rapidly by exhaling, there can be more lasting effects of the medication on white blood cell counts. Very low lymphocyte counts can occur on Tecfidera which can take an extended period of time to recover after stopping the medication. This should be monitored if an issue (particularly if transitioning to another therapy). A. Scott Nielsen MD MMSc Neurologist and MS Specialist Kaiser Permanente Here is My Question:
Can a relapse involving mostly paresthesia in a limb last 6 months and then be gone? Some numbness, motor involvement, ie. dropfoot, and overlay of Uhthoff's - ie symptoms amplified by heat? Then completely gone, except with heat, after 6 months? Couls this be considered a relapse? Answer: It is unlikely that a relapse would last this long. A relapse represents inflammation in the central nervous system. The typical relapse will result in inflammation for <4 weeks (usually not more than 6 weeks). However, once the inflammation ends, a residual scar is left behind which can result in fluctuating symptoms just like you describe. Heat is a common factor that can trigger or worsen those symptoms. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I was diagnosed with MS in August 2016, following an episode of optic neuritis. The neurologist that I saw felt that other neurological symptoms dating back over 10 years were earlier signs of MS that had been misdiagnosed (as viral laberynthitis, whiplash, pinched nerves etc). I have had mostly sensory symptoms, until this June 2016, when I had a complex relapse with optic neuritis and left-sided weakness, coupled with a return of all previous symptoms. I am now fully recovered and essentially symptom-free. I am contemplating trying Lemtrada because I feel it would give me a long-term chance of staying symptom-free. Is this something that you would recommend to someone with such mild symptoms? Is it worth the risks? I am a 36 year old female living in the UK. I am currently taking Tecfidera. Answer: Taking Lemtrada would not be unreasonable. While there are many risks you need to consider (requiring monthly lab work for five years after the first infusion) the benefits of that medication are quite high. Patients were included in the original trials who had not been previously treated and they did have significant benefits in terms of reducing relapses, MRI lesions and disability. On the other hand, if you are tolerating Tecfidera well with no side effects you may want to see how you do on therapy with that medication since you just started it. Discuss this information with your physician. 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:
What is the efficacy of epidural or intrathecal injection of steroids to help with MS exacerbations in non-progressive patients? Would this be a better targeted therapy than systemic oral, IV, or IM steroids? Answer: This subject was hotly debated in the 1970s and 1980s with limited data from a few small case-control series (with the control typically consisting of IV or oral systemic steroids). These limited studies did not suggest superiority of intrathecal steroid over systemic administration. Much of the literature argued the point of serious complications of the intrathecal route (aseptic meningitis, calcified pachymeningitis, etc). While the thought of intrathecal steroid administration is interesting, I would also point out that 1) IV steroid does penetrate the central nervous system with good effect (and arguably with less side effect than intrathecal administration), 2) there is peripheral immune system activation the does occur in MS that then moves into the nervous system (so targeting steroids solely to the CNS space likely is not a robust strategy), and 3) steroids can speed recovery of neurologic deficit but has not shown the ability to actually modify the underlying disease course. Currently, there appears to be some research groups looking into intrathecal steroid administration for progressive forms of MS (a different topic not asked in your question). At present, there isn't enough data to comment on that topic. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente |
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