|
|
Welcome to the Virtual MS Center!Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
|
|
Here is My Question:
This question has been really been driving me nuts. I know there is research pointing to a possible like between MS and EBV but have you ever heard of or is it possible that human parvovirus B19 could trigger MS in the same way? I have RRMS diagnosed last year around May 2018. In 2015, I started having a bunch of crazy symptoms like muscle pain, difficulty walking, burning, dizziness, and a bunch of other weird things. My smart PCP asked if my daughter recently had fifth disease and low and behold she had it the week before. It was severe and I ended up with a positive ANA and anti-RNP antibodies, liver inflammation and a ton other stuff. Had to see Rheumatologist to rule out mixed connective tissue disease etc. Eventually the ANA and anti-RNP became normal and we just left things at that. I wish I had an MRI around that time but didn’t. I kept getting weird symptoms for years and finally got a diagnosis of MS last year and have brain and spinal cord lesions and brain atrophy. I’m 38 :(. I’ve just always been so curious as to whether it is possible for the parvo to trigger this but most of my MDs have never seen an adult with parvo. Thanks!!!! Answer: I am aware of adults with Parvovirus B19 infections, but there is as yet no link between this virus and the development of MS reported in the literature. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego
0 Comments
Here is My Question:
I am a SPMS patient and have had MS for 40 years. I am interested in starting Mayzent which is a new medicine for the SPMS patients. I would like to find out how patients have started on Matzent, How they are doing on the Mayzent...any reactions or anything else? Thank You. Answer: Mayzent (generic name Siponimod) is the newest SIP1 receptor modulator. The oldest, and currently the only other available, SIP1 receptor modulator is Gilenya (generic name Fingolimod). Mayzent is called a selective SIP1 receptor modulator because it only binds to the type 1 and type 5 receptors, whereas Gilenya binds to all SIP1 receptors. For practical purposes this has little effect on the side effect profile of these drugs. The most common side effects are headache, elevated blood pressure and elevated liver enzymes. Less common or rare side effects include macular edema (usually beginning in the first 4 months of treatment), shortness of breath, cardiac arrhythmias (abnormal heart beat), various infections including shingles and a condition called posterior reversible encephalopathy syndrome. Physicians monitor regularly for these conditions, all of which are reversible with prompt identification and treatment I am not aware of any other unexpected problems emerging since the drug was approved and released by the FDA. 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 my neurologist sign a letter for an emotional support animal? Answer: Any licensed health care provider can provide you with a letter of justification for an emotional support animal. The letter must state that the person applying has a physical or mental impairment (no need to mention the actual diagnosis) that substantially limits one or more major life activities and their is a disability-related need for an assistance animal. Specifically, in the case of an emotion support animal, the animal provides emotional support that alleviates one or more of the identified symptoms or effects of a person's existing disability. 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 long does Plegridy remain in your system once you stop? Answer: Plegridy’s half life is ~78 hours (meaning it takes 78 hours for the body to remove 50% of the Plegridy in your system). It is primarily removed by the kidneys, so if there is kidney disease, it may take longer. Given the half life of the drug, it is reasonable to assume it would take approximately 2 weeks to be removed from the body. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I have RRMS and I’m on Ocrevus. I have had a lot of problems lately with symptoms. I had my second full dose of Ocrevus a week ago. My recent blood work showed a generally normal CBC with a WBC at the low edge but my monocytes % was elevated but only 11. Would this possibly have anything to do with my recent Ocrevus infusion? MS in general? Or is it something I should get looked into for other causes? I looked my labs over the last few years and my monocytes % have steadily increased and have been between 9-11 for a few years. I know it’s mild so I was wondering if I should have any concern outside of MS. Answer: Relative percentages of lymphocytes will change when using immunotherapy. The absolute numbers are more important. Mild elevations are not likely to be clinically meaningful. Keep in mind that symptomatic therapy is a different discussion than disease modifying therapy (ie, Ocrevus). A. Scott Nielsen MD MMSc Neurologist and MS Specialist for Kaiser Permanente Here is My Question:
Is This Banding Sensation in My Legs Due to MS? I know that banding, or girdling, sensations around the torso is a common symptom of MS, but can banding also be felt in the limbs? In the past, I have experienced numbness that started in both feet that began to creep up my legs. Eventually it felt as if I were wearing strange ankle socks or had ace bandages wrapped around my ankles. Over time, the slight constricting sensation would go away and reappear at times (often in the heat). The highest I’ve felt it is above both knees. It’s not painful, just a curious and annoying sensation. Answer: MS can produce sensory illusions of a banding sensation. These can be experienced in any location based on where in the nervous system MS has affected. Your neurologist can help determine if the location of your prior MS involvement mate neuroanatomical sense for the sensory illusions you experience. She/he can also help determine if there is a symptomatic treatment strategy if the symptoms are severe. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Regarding my previous question about my 67 yr old husband stopping Ocrevus, I have another question. My husband has PPMS and with his progression he is now in a wheelchair and with not much change with his MRI (as I understand it)...is there a medication he could take? Not being the prescribing doctor and with this limited amount of history on my husband, I'd like to know your opinion on whether there is a med for him or not. Thank you. Answer: While there are no medications for your husband at this time, there are things that can be done to lessen his symptoms and improve his quality of life. These are topics to discuss further with your MS specialist. Good luck to you 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 writing this for my husband who is a 67 year old male diagnosed with MS in 2015. He has gone from a cane to a walker and now is total assist in a wheelchair. He also struggles with dysphagia and is demonstrating some dementia. He used to take Tecfidera and now has been on Ocrevus for the last year and 1/2. He is in need of a feeding tube but is refusing. His MS neurologist has suggested stopping Ocrevus, he says it could be doing him more harm than good since he is a good candidate for aspiration pneumonia and Ocrevus depletes your immune system. Should he not continue with the Ocrevus infusions? Thank you Answer: It would be difficult to justify treatment with Ocrevus for your husband based on the information you’ve provided. Specifically, 1. The clinical trials that led to approval of Ocrevus for progressive MS only included people under the age of 55. Your husband is significantly older. 2. The clinical trial that led to approval of Ocrevus for progressive MS only included people who were still ambulatory. Your husband is wheelchair bound with significant cognitive dysfunction and swallowing difficulty. 3. As you mentioned, your husband is at high risk of pneumonia. This risk will be increased by treatment with Ocrevus. All treatment decisions need to be personalized and directed by his physician. In this case I agree with his or her recommendation to stop treatment. 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. Here is My Question:
I vomit about 10 to 12 hours after taking Plegridy, so on my injection days I am eating so little that I feel weak. What should I do? Answer: Nausea and vomiting are not uncommon side effects with Plegridy, especially early in treatment. Your doctor will know if you have other medical problems or take other medications that may be contributing to this side effect. Your doctor will also be able to give you a medicine to prevent this side effect, if you continue on Plegridy. 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 wondering can you take finasteride with MS and is it safe to use with other various MS medications? Answer: There is no contraindication for the use of finasteride in Multiple Sclerosis patients. 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:
If I have cold should I stop taking Tecfidera? Answer: For most people there is no reason to stop Tecfidera for a minor infection like a cold. You should inform your doctor so they at least know about your infection. 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 neuro is planning Rituximab for me and I have got all the tests prescribed by him done. Everything is normal, I have even taken the vaccinations he advised me to but the WBC test wasn't normal in the sense that my WBC or TLC count came out to be low each time I got it done (the values being 3900 and 4400, wherein the B cell count was high which anyways would get depleted after the infusion leaving me with very little immune system to fight any possible infections in case my WBC count remained low) and my doctor has advised me to wait for the count to normalize. But why it is low at the very first place (as I have been drug-free for the past 1.5 years) ? I mean a period that long is good enough for wash out. Answer: There are many reasons for a mildly low white blood cell count (WBC). The numbers you provide (3900 and 4400) are actually fairly normal WBC. You didn’t actual provide a total lymphocyte count (TLC), so I can not comment on whether that count is low. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
What imaging protocol should be included with the MRI to visualize the trigeminal nerve and brain stem better? Answer: The imaging protocol for assessment of cranial nerves usually includes typical T2 and T1 weighted images with or without gad preferably with 3D thin sections, plus a balanced gradient echo image. The name of the balance gradient echo image varies according to the MRI manufacturer; the GE sequence is called FIESTA, Seimen’s is called FISP and Philips’ is called Balanced-FFE. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego How long do I have to wait after my last infusion of Ocrevus to switch back to Tecfidera??10/14/2019 Here is My Question:
How long do I have to wait after my last infusion of Ocrevus to switch back to Tecfidera?? Answer: The answer to this depends on the MS disease response (not MS symptoms) to the Ocrevus as well as your immune system response (determined by blood testing). In general, combination treatments are not overwhelmingly better than mono therapy in MS, but we can see increased risk with combination therapy (ie, PML). By monitoring the immune system through blood testing over time, your physician can determine when your b-cells are returning (typically after 6 months). A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Can a painful and tight achilles tendon be related to MS or possible worsening of walking? I have MS and have issues with my feet especially my right. I get numbness in my foot after walking a distance. I’ve recently started having Achilles area pain and had a popping. Went to an Ortho and they said it is likely MS related and could lead to foot drop etc. is the something you’ve seen with MS? If so, does it usually precede the foot drop issues? My pain is usually when I point my toe, not flex them up. I also have weakness when pushing the Gas pedal etc with that same movement. Thanks! Answer: A tight Achilles and popping is a musculoskeletal issue and not directly related to MS. Spasticity of muscle can occur due to MS but is not a tendon issue. I’d suggest you speak with your neurologist or get another opinion (from a podiatrist or sports medicine physician). A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Is it OK to take Ocrevus and Mirena together? Answer: There are no specific problems associated with the use of Ocrevus in people with a hormone releasing IUD like Mirena. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego does trigeminal neuralgia in MS usually mean a definite pons lesions or brain stem lesions?10/7/2019 Here is My Question:
I have had MS for about a year and a half. I have developed many symptoms and it just won’t let up. My question is about trigeminal neuralgia. I have been having a severe shooting aching burning pain on and off in the right side of my face and I’m about 90% sure it’s trigeminal neuralgia. It is very typical of what I’m reading. I have an MRI scheduled next week. I was wondering, does trigeminal neuralgia in MS usually mean a definite pons lesions or brain stem lesions? Can any of the other lesions in the brain cause this pain? I haven’t had any brain stem lesions but I do have cortical and juxtacortical and spinal cord lesions. My highest spinal cord lesions is in C2. I also didn’t have any cerebellum lesions. Should I expect to have pons lesions now? Answer: Both Trigeminal neuralgia (TN) and atypical facial pain are common in MS patients. Trigeminal neuralgia is most often a paroxysmal (rapidly coming and going often multiple times a day), lancinating (like a knife or ice pick) pain in the jaw or maxillary region usually triggered by touch, chewing or talking. Trigeminal neuralgia in MS patients can be due to vascular compression of the trigeminal nerve as it is exiting the brainstem, a demyelinating plaque of the trigeminal nerve exit zone or both. We can often see MS involvement of the brainstem in patients with trigeminal neuralgia, but only if high field (3 Tesla) magnets are used with the correct sequences. Typical MRI scans often do not clearly show the area involved by your MS that is causing the trigeminal neuralgia. TN is very treatable so I hope you get relief soon. 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 scheduled to begin Tysabri on Monday and today is Thursday. Do I continue taking my current medication Aubagio up until my infusion appointment? Answer: You should speak with your neurologist. I put my patients through a cholestyramine elimination protocol when transitioning away from aubagio. Also, it is not recommended to be on combination therapy for MS. Not undergoing the elimination protocol would effectively be getting combined therapy since Aubagio can be detected in the body for an extended period of time after stopping (up to 2 years). A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I am taking Tecfedira and want to know how I can raise my WBC, as this medicine is making it low. Answer: This is a known effect to Tecfidera exposure. The fact that WBC are below the normal level is not surprising. What’s more important is the degree of the drop. The only way to reverse significant/severe leukopenia is to discontinue the medicine (this should only be done with the knowledge of your treating physician). In your case, it isn’t clear that coming off is even advised. That should be determined by discussion 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.
Archives
November 2019
Categories
All
|
RSS Feed
