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Question:
I have 2 neurologists. A MS Specialist that is my primary prescriber for all meds located in another state, and a local neurologist affiliated with the local hospital which oversees my care in the event of a relapse and primarily needed because my MS neuro doesn't have privileges at the local hospital where I receive my Tysabri. My MS neuro is over the top excited about starting me on Ocrevus. My local neuro will accommodate the transition but she does not think there should be any rush to move to it just because it is "new". She is so reluctant that she refuses to initiate the prescription, prior approval, etc and will only order the medication once he has done the "leg" work. His staff has informed me of this and has asked me to go to another facility where her accommodation is not needed. It is more of a drive but only twice a year. Also, the facility that I get the Tysabri is not infusing the Ocrevus today, but should be set up by the fall when I plan to make the transition. I have been on Tysabri since 2012 briefly got off to go on Tecfidera with poor results low WBC and returned to Tysabri. MRI no new lesions. JC negative (.18). No relapses. Planned to switch September. My rationale was that I've been playing with fire on Tysabri with the risk of PML, and that if this doesn't work, I can go back. Patients who have switched to Ocrevus from Tysabri, are they experiencing rebound effects? A general improvement in symptoms such as fatigue and cognition? And is it controlling the lesion load and relapse rate as well as the Tysabri? Certainly there are comparable studies since I am sure many Tysabri patients are making that leap. Answer: The main reasons to switch from Natalizumab (brand name Tysabri) to Ocrelizumab (brand name Ocrevus) include the following:
It doesn’t sound like any of those reasons apply to you so your local doctor may be correct for the wrong reason; that is, being newly approved by the FDA does not make Ocrelizumab a poor choice; the reasons I just mentioned make it a poor choice. Why change what is already working if you have an extremely low risk of developing PML (less than 1 in 10,000 risk) ? After all, you are JCV antibody negative. And yes, there is evidence that Anti-CD20 monoclonal antibodies like Rituximab and Ocrelizumab prevent withdrawal relapses after stopping Tysabri, if you ever need to switch to Ocrelizumab in the future. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director 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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My neurologist thought I had MS. I had an MRI of brain, cervical spine and thoracic spine. There were several lesions on the brain. He sent me to an MS specialist he said the lesions were not in a telltale spot for MS but I had volume loss, signal abnormalities and spinal cord atrophy and also had a pattern VEP which was abnormal. I had a repeat flash VEP which was normal. My MRIs were done in an open machine. Should I get another MRI in a closed machine?
Answer: It sounds as though your evaluation is incomplete. Your doctors should consider obtaining CSF through a procedure called a lumbar puncture to determine if you have oligoclonal bands by immunoelectrophoresis. Otherwise it is not possible for us to assess your case without a detailed history and examination. 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:
Everyone gets an itch on their nose but to have an itch that never goes away, and on a nose that is completely numb, is aggravating. I have been told this is a symptom of MS and the sensation of itching is a phantom one. I can stop the itch by touching my nose [I don't feel it, though]. I think this short circuits the brain. Unless there's something that can be done, you'll always spot me in a crowd with my finger stuck to my nose. Any suggestions? Answer: Neurogenic itching is, well, annoying as you’ve learned. I would suggest that your doctor give you a trial of the the usual remedies first; this includes gabapentin, pregabaline, and carbamezpine in that order. If this doesn’t work your doctor should try a low dose tricyclic next such as nortriptyline. If this doesn’t work a trial of 8% intranasal lidocaine spray should help determine if a selective percutaneous Radio-Frequency rhizotomy of the Gasserian ganglion will work. 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:
Has anyone experienced flushing on the brain instead of face? Third day on Tecfidera and having this symptom. Answer: I am not sure how one would determine they were experiencing “flushing on the brain.” You may certainly experience flushing involving the skin covering your head and face. The flushing is only cutaneous and does not involve deeper structures like the brain 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:
Is fatigue related foot drop more, less or similarly associated with MS compared to peroneal compression foot drop? Not much available on google on this topic. Many thanks. Answer: Foot drop due to MS is due to demyelinating disease of the central nervous system (brain and spinal cord). Compressive peroneal neuropathy results in footdrop but is an injury of the peripheral nervous system (which MS does not effect). Either injury (central or peripheral) can transiently worsen with exertion (i.e., leading to fatiguable weakness). A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I just finished my second dose of Lemtrada last week. For a while I have been thinking about getting laser hair removal on my face. Is it safe to do so whilst on Lemtrada? Answer: In general there are no contraindications to laser hair removal after Lemtrada, but your dermatologist should be made aware. 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 work an intense job requiring a focused attention. My MS has progressed such that this isn't working for me anymore. I will need to step out of the business world soon, I fear. Are there organizations that can help me deal with and apply for disability? Answer: Here are my "2 cents":
Hope this helps. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Question:
Can I donate plasma? Answer: We answer every question that comes in to HealthCare Journey, but we do ask that to help us (as we receive MANY questions)...that you type your question into the search box in the upper right corner of this page BEFORE asking our specialists a question. We have so much information on this site that we might be able to answer your question without having to ask our specialists. This question was answered in a previous blog. You can READ IT HERE Question:
What is MS? Answer: Well...this whole website contains information on MS, but to start with the basics we recommend going to our "What is MS?" page...READ MORE Here is My Question:
I received my first infusion of Ocrevus in April 2017. Now, in July, I am experiencing worsening leg weakness and overall fatigue. Since Ocrevus targets B cells, could this be caused by the medication? Is it a matter of feeling worse before I feel better? Answer: There are several reasons you may be experiencing worsening leg weakness and fatigue three months after receiving Ocrevus: 1. The leg weakness and fatigue may not be a result of inflammatory demyelination; Remember, MS can cause worsening symptoms in a number of ways unrelated to inflammation and our treatments only target inflammatory injury. For instance, MS progression can be the result of a degenerative process in the nervous system that becomes distinct from any underlying inflammation in the nervous system. The leg weakness and fatigue could be secondary to hot weather or an underlying infection. In this case we call this a pseudorelapse 2. The Ocrevus is not working. This is less likely. Ask your doctors to make sure there is no evidence of a urinary tract infection or other kinds of infection and try to stay cool and well hydrated. 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 2001. I took Avonex for 12-13yrs? I took a year off and started Plegridy. I am sick of interferons and have been off medicine for a year now but I am getting worse. My hands shake and I can't control them sometimes. My hips and knees are killing me! (Pain). My Doctor took blood and I have been exposed to pls He gave me Tecfidera 6 weeks ago and said we'd keep a close eye on it. He has been my doctor since 2003. But I am scared. I decided not to start it until this Tuesday because my ex and I are selling our house, closing tomorrow. We had a lot to do but I was really hurting. Anyway, I had a rash I thought was heat on my upper tummy (not my tatas) one month ago. Two weeks ago I went to urgent care because I had an egg growing on my elbow. She drained it and said it was bursitis. The next day the egg was back. My elbow doesn't hurt but my hips knees and ankles ache. Not my egg though. And all those areas are swollen. My rash under tatas back. I never títeres for RA. Can that change? The drained egg looked like Hawaiian Punch. What's going on???? I don't want to take the Tecfidera. I think Ocrevus...what happens when bursitis shows up on a 57 year old woman? Is this the beginning of the next stage??? Answer: I do not think the bursitis in your elbow or your joint pains are related to MS. It would be hard for me to recommend a treatment for your MS without knowing more about your condition. I suggest you and your doctors figure out what is happening with your joints before you initiate a new treatment for your MS. 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:
In which areas of CNS do lesions typically produce footdrop? Answer: Foot-drop can occur due to damage of the relevant circuitry in the pyramidal/cortico-spinal tract. This tract starts in the motor cortex and descends through the brainstem where it crosses over in the medulla to the other side. Descending fibers then communicate with the alpha motor neuron which stimulates muscle contraction. Another site for foot drop can occur by a compression neuropathy of the peroneal nerve (typically just below the knee on the lateral aspect of the lower leg involved). A peroneal compression neuropathy is not caused by MS. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I have been on Tysabri for over ten years. My JC virus test have come back negative this whole time........until now. My neuro called me today to tell me that my test came back positive. We now need to decide if I stay on my current medicine or change to a different therapy. She did give me a number of .4 as the reading, but I don't know what that means truly. Please explain. Answer: The decision to stay on or change from Tysabri in this situation is a very personalized issue – even with a positive blood test each patient’s decision is specific to their history. The number associated with the JCV Ab is referred to as an index. Data suggests that the highest risk of PML occurs in patients with an index above 1.5. 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 NOTE: There is a LOT written about JC virus on this site, so just type in "JC Virus" in the search box and you will find lots of valuable information. Here is My Question:
Another JCV/PML question. I'm a 50 year old mail, diagnosed RRMS about 10 years ago. Seems non aggressive, though symptoms have slowly built. 7t results indicates more gray matter activity than white matter. 1.5 years on Avonex. The last 6 years on Tysabri. Just tested JCV positive, 2.6 on the index. Two main questions. Not having more specific info, I understand that the responses have to be somewhat to the generic cases.
Is there anything that I can do other than waiting to see if symptoms of PML develop? Are there diagnostic tests to see if PML development is starting? If so, and development is seen, I have not seen any treatments that could be started. Is that the case? THANKS! Answer: There is a lot to answer here, and you are correct that this answer will be more on the conservative side. To get to the heart of your question, you should take these questions to your treating neurologist. You appear to be in the higher risk group for PML. High risk is relative and dependent on your natural affinity or avoidance to risk. Lengthening time between infusions is reasonable to help mitigate some of the risk of PML, but there is still risk. Cortical demyelination seen on research magnets (7T) is highly associated with disability (whether in the present and future) but this metric hasn't been utilized in previous clinical trials and is difficult to comment on at this time. What may be more significant is the slowly evolving symptoms you mention. If by symptoms you mean more pervasive decline in function, that may indicate a secondary progressive course. If present, moving away from Tysabri may be a consideration. Coming off Tysabri can be problematic with rebound disease activity in approximately 50% of cases if nothing more is done. A good consideration for a transition medication is rituximab or Ocrevus. PML has been seen out to 6 months since stopping Tysabri, however that risk is small considered to the risk of rebound. Treatment of PML is supportive and focused on strategies to assist the immune system (typically in a hospital setting) to try and clear the virus. If survived, PML leaves significant disability. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente 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. Here is My Question:
What suggests to a doctor that a thoracic MRI should be ordered? And how does doctor decide whether to order with or without contrast? Thanks in advance for your answer. Answer: It is different for every patient, but in general, we definitely order MRIs if we are looking for thoracic cord involvement from MS. Symptoms would include numbness or weakness in legs or abdomen and/or bowel/bladder symptoms. 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:
Does water or swimming in a pool help with heat tolerance? Answer: Yes. Some of my patients clued me into the Enduracool apparel line of products at mission.com. I'd encourage patients to add to this thread based on their experience of the best ways to dissipate body heat and keeping cool this summer. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Migraines are increasing in frequency. I had Cosmetic Botox done in early April and it helped, but it is wearing off. I am getting at least 2 per week, including blinding auras and debilitating pain. My Neurologist (MS Specialist) discontinued Imitrex, and prescribed Zofran for the nausea and vomiting. The pain is unbearable. My PCP prescribed Norco, but I am not happy with the side effects, particularly how long it takes to work, and I do not take it frequently. I have tried a chiropractor and acupuncture, but to no avail. I was advised to get a toradol injection during the migraine. Is that the only solution? It is getting to the point where they are interfering with my ability to function. I would prefer a holistic treatment, but aside from a cartoon sized mallet, what are my options? Thank you for your help. Answer: Given the frequency of your migraines, you would be a candidate for another prophylactic therapy (besides Botox). Other options could include topiramate, elavil, or inderal. If prophylactic migraine therapies are ineffective, it has been my experience that sleep apnea should be investigated, because if present, apnea can make headaches refractory in the absence of treatment for sleep apnea. You can discuss those options with your neurologist. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente 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. |
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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