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I have Relapsing Remitting MS. I was active before MS & now, there are physical activities l can no longer do. I'd like to be able to become the person I was before. Will collagen improve my mobility w/ little or no pain? Answer; It is important not to forget that the diagnosis of MS is not your identity. I only say this because it is easy to attribute any symptom one has to MS (physicians may make that assumption too). However, as we all age, we become susceptible to the process of aging...and associated aches and pains. Collagen wouldn’t be expected to treat an MS-related symptom but may help something else. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente
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Hi, have you heard of rectal and pelvic spasms and pain and shooting rectal pain/spasm be related to the neuro effects of MS? I have an on and off shooting pain like a knife up the rectum shooting VERY high and causing pain in the back. And also spasm type pain in my pelvis. They did a CT and no obvious cause. Can’t get my neuro to call back or make an appointment. It seems like what I’ve read of proctalgia fugax or levator ani. Has this ever been something that could be caused by the neuro affects of MS? I have appointments with a GI and a GYN and saw my PCP. Answer: Muscle spasm is a well know symptom of MS. It is conceivable that the pelvic floor muscle could be involved. Use of antispasmodic medication could be trialed. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Is burning lips a sign of MS? Answer: Burning sensations—or paresthesias—can be a sign of MS, but also can be due to a number of causes and some are completely benign. Proper evaluation by your Doctor should help distinguish these in your case. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I recently tested with a JCV value of 3.76. I may be wrong but this seems to be a good reason to not start any of the immunosuppressant medications versus Copaxone. I've been having problems with the Copaxone, more psychologically than anything and my doc recently suggested we could try tecfedra. But now given this number, since it seems significantly higher than the "top range" numbers. A side note is, is there any reason to be concerned about a number that high - at 3.76? I also had more than 6 OC bands in a spinal tap, and wonder if there is a connection there with the JCV. I'm sure my doc will agree is not a good idea but was wondering on feedback here. Answer: The JCV tiger level really only has significance if you are on a DMT that is associated with PML. Tecfidera certainly is one such DMT. Other considerations for choice of appropriate DMT is the topography of your disease (ie, where in the nervous system has the MS attacked). For those with involvement of the posterior fossa or spinal cord, consideration for a highly effective therapy should be considered. Unfortunately, those therapies tend to be associated with PML. Of those, the b-cell biological appear to be lower risk. For those without involvement of the spinal cord or posterior fossa, a modestly effective therapy like glatiramer or interferon-beta could be more appropriate and are not associated with PML. Ultimately you will want to talk with your neurologist to understand why a specific DMT is being recommended and while others are not. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
To lower risk for covid, should I stop smoking medical cannabis? I only smoke twice a week via vaping to help with spasticity. It's been far more effective than other methods of consuming cannabis. I do also take baclofen daily. Due to ocrevus immunosuppression, my family is living low risk lifestyle. Answer: I am not aware of any association between cannabis use and either the risk of COVID 19 infection or the severity of infection. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
Does smoking worsen MS? Answer: Smoking is associated with a two fold accelerated rate of progression in people with MS Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
Due to the non availability of Tecfidera 240, how long will the medicine be discontinued in RRMS? Answer: Please contact Biogen at 800-456-2255 if you have any questions about the availability of Tecfidera in your area. I was not aware of any availability issues. Good luck Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
After Tecfidera i am unable to walk straight. Imbalance is the problem. Answer: Can you clarify your question? Are you asking if Tecfidera worsened your balance? If that is your question, the answer is no; MS made your balance worse Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Is it true that you are more likely to be hospitalized from COVID 19 if you are taking Ocrevus?7/18/2020 Here is My Question:
I recently discovered this link It says that with Ocrevus you may be might be more likely to hospitalized. How true is this? I have an Infusion coming up this week and concerned. Answer: There is a growing concern that treatment with anti-CD20 therapies (the most commonly used drugs in this class at present are Rituximab and Ocrelizumab) increases the risk of hospitalization and severe infection from COVID 19. Roche, the company that makes Ocrelizumab reported in late May that 30% of people on Ocrevus who are infected with COVID 19 experience severe infections, but Roche was not able to provide any other significant information on risk factors or outcomes in infected patients. From the beginning of the outbreak, we have advocated delaying Ocrelizumab infusions as long as possible in people with MS, particularly in those already on treatment. For those who are just initiating treatment, whether the treatment start should be delayed tends on the severity of their disease and their other risk factors for severe COVID 19 infection. Since the benefits of treatment are marginal in primary progressive MS patients over the age of 50, and these are often the patients at highest risk for severe COVID 19 infection, we have particularly avoided Ocrevus in this patient group during the Pandemic. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
Does collagen assist with MS? Answer: There is no evidence that collagen supplements benefit or harm MS. To be clear there are also no adequate studies of collagen in people with ms, mostly because there has never been a proposed scientific rationale or hypothesis to guide studies of collagen supplementation. Most people who take collagen supplements and ascribe to other dietary approaches to MS almost make a number of important dietary changes that are equally likely to benefit their daily symptoms. This changes includes cutting down on carbohydrates and processed food. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I have been sick with what they think is COVID for about 6 weeks. I think it is improving now but I was in the ER twice and many visits to urgent care, xrays, CT scans, meds etc. I have RRMS and am 38. Now that the illness is slowing down, I have been having some major MS symptom flaring or pseudo-exacerbation. Is it normal for the MS symptoms to not be so bad DURING the lower respiratory infection/pneumonia and WORSE AFTER the infection starts to subside? Just never had this. The symptoms are all my same usual old symptoms but just a bit worse. Answer: This is common with many viral infections in people with MS, particularly those that occur in late spring and early summer; At the onset of the viral illness people with MS may experience worsening symptoms from an elevated body temperature. This improves with cooling and rest. After several weeks the activation of the immune system by the viral infection can led to an activation of your MS (a relapse). This is probably the reason relapses in people with MS tend to cluster during the late Spring and early summer. This may in turn be influenced by Vitamin D levels which tend to be low in Spring and rise by the end of summer Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I am a 54-year-old woman who has had MS for approximately 20 years. I am currently taking Gilenya. My younger sister at 52 has just been diagnosed with Hodgkin’s Lymphoma stage one. My question is whether my sister’s recent diagnosis has implications for me, as a person taking an immunosuppressant medication. Additionally, I note in medical literature there may be a link between the two conditions. Answer: There are many epidemiological similarities between Hodgkin's lymphoma (HL) and Multiple Sclerosis (MS), most notably peak age incidence in young adults (although there is a bimodal peak with HL and your sister would be considered part of the second older peak population), higher socioeconomic status, genetic associations (especially HLA locus) and links to Epstein Barr Virus and decreased Vitamin D levels. In fact a genomic meta analysis suggested that HL is more closely associated with autoimmune diseases than cancers. Epidemiological studies demonstrate clustering of HL and MS within families but not within individuals. This means that there is a higher risk of both diseases occurring within the first degree relatives of the same family but NOT within any individual member of the family. So to answer your question, I see no particular reason for your sister's HL diagnosis to have any impact on your care or management. There is no known association between treatment with Gilenya and HL. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I have 5 members in my family including my sibling that have been diagnosed with MS, I have several symptoms and they have gotten worse over the past 5 years such as, painful, severe, frequent muscle spasms (no less than 10 per hour that jump all over my body, similar to what you would see with an ALS patient), electric or crawling feeling through my body, memory loss/confusion, numbness and tingling in all extremities that come and go, loss of balance, double vision, troubles swallowing, small nerve fiber neuropathy, difficulty speaking and remembering words. My EMG studies have come back abnormal and 2 1/2 years ago my MRI of neck and brain as well as spinal tap came back normal. Is it possible to have lesions lower in the spine that would not have been caught on the brain and neck MRI that could be diagnosed as MS even with a normal spinal tap? Answer: People with MS do not experience small fiber neuropathies or any form of sensory neuropathy. Remember, MS is a disease of the central nervous system and neuropathies, by definition, are diseases of the peripheral nervous system. It is certainly possible to have "lesions" in the thoracic spinal cord and not see lesions in the brain or cervical spinal cord in people with MS but it would be rare after 5 years of symptoms Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
My first relapse was after the first insert of a copper IUD. My MRI showed results that suggested I may have had MS for quite some time and not known about it (no symptoms). Is it possible the copper IUD caused my relapse? It was literally within days after putting it in. Answer: The Guidelines for use of medical contraceptives in MS published in 2016 lists copper and hormonal IUDs as safe and effective in all categories of women with MS. There are no studies showing an increased risk of relapses with copper IUDs. There is one study by the New York State Consortium of MS Centers that even suggested that copper IUDs delayed the onset of MS symptoms. This later study would require larger confirmatory studies before we would consider the information validated. Hope this information helps you. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
Hello. I am a 24 year old female. I was diagnosed with MS in 2013. I just found out from my new Neuro that my JCV level is 1.45. I also have lesions on my brain and a C5 lesion in my spinal cord. I used Gilenya a few years ago but stopped due to personal reasons. My Neuro wants me to start taking Ocrevus ASAP but I am concerned because of me testing JCV positive. I fear I will develop PML. Answer: Three MS disease modifying therapies have been directly linked to PML. The highest risk is associated with Tysabri. The DMT with the second highest risk is Fingolimod (Gilenya) followed by Tecfidera. To my knowledge there has only been one de novo case of PML in an elderly (over 70 year old) MS patient on Ocrevus. As I have discussed previously, we have good mitigation strategies for the prevention of PML with natalizumab and tecfidera. For all DMTs associated with PML, I personally feel one of best mitigation strategies is to avoid using them in elderly patients (over 65). This certainly applies to the use of Ocrevus. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego 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. Here is My Question:
For the past 7 years I've been on Tysabri every 4 weeks but my neurologist decided to change it to 6 weekly infusions much to my disgust 😥 and I don't feel the same. I'm more tired and I'm weaker and my head is constantly sore. HELP Answer: There are several good reasons to switch an individual on Tysabri to every 6 week infusions after a year or more of stability on every 4 week infusions. These reasons include the following:
Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
Can I take iron supplements during pregnancy to keep my blood pressure from dropping low and to avoid dizziness? Answer: For the most part, taking Iron supplements during pregnancy is safe. You need at least 27 mg of iron, but try not to get more than 45 mg each day during your pregnancy or while breastfeeding. However, iron might not influence your blood pressure and symptoms as you are anticipating. I recommend you discuss with your primary care physician or ob/gyn these symptoms. Augusto Miravalle, MD FAAN Clinical Associate Professor of Neurology Liaison for Neurology, Fort Collins Branch University of Colorado Denver School of Medicine 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:
Is burning lips a sign of MS? Answer: Burning sensations—or paresthesias—can be a sign of MS, but also can be due to a number of causes and some are completely benign. Proper evaluation by your doctor should help distinguish these in your case. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
For the past few years, I have suffered from pain on my left side. I have had several recurring dreams where I am diagnosed with MS. I am typically in pain most of the time, my hands tremble, and I notice I am dropping things more. Is it worth me making an appointment with my local doctor to talk about this? Answer: Absolutely, you should discuss with your neurologist these symptoms. As usual, it is helpful to come prepared to your visit with a diary of symptoms and updated list of medications. Augusto Miravalle, MD FAAN Clinical Associate Professor of Neurology Liaison for Neurology, Fort Collins Branch University of Colorado Denver School of Medicine |
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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