Columns The MS Wire - A Column by Ed Tobias MS news notes: Stem cell therapy, genetic variant, diet MS news notes: Stem cell therapy, genetic variant, diet Columnist Ed Tobias comments on the week's top MS news by Ed Tobias | July 3, 2023 Share this article: Share article via email Copy article link Welcome to “MS News Notes,” a Monday morning column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening: Another study shows positive results with stem cell therapy Yet another study has concluded that autologous hematopoietic stem cell transplant (aHSCT) was highly effective in treating some people with MS. The MS News Today article “Stem cell therapy highly effective in active RRMS: Real-world study” reports that nearly 80% of participants with highly active relapsing-remitting multiple sclerosis (RRMS) were relapse-free two years after they were treated with aHSCT, according to a small study in Denmark. They also had no worsening of their disease. More than 69% achieved a clinical outcome called NEDA-3, which means there was no evidence of disease activity — including no relapses or worsening disability, and no new or enlarging lesions seen on MRI scans. Given this and other studies, I really wish aHSCT were made readily available as a treatment option for people with MS in the United States. Recommended Reading June 16, 2023 News by Steve Bryson, PhD MRI method detects myelin repair with over-the-counter antihistamine Could a genetic variant explain differences in MS severity? While MS is not considered to be an inherited disease (I’m one of many people with MS who have no family history of it), studies continue to report apparent genetic connections. The article “Newly discovered genetic variant tied to faster MS progression” reports on a study involving more than 12,500 people across three continents. From that study, researchers identified a genetic variant that was associated with faster MS progression and greater brain tissue damage. One of the study’s authors said that “inheriting this genetic variant from both parents accelerates the time to needing a walking aid by almost four years.” To me, that’s big news. The National Multiple Sclerosis Society notes that understanding more about the relationship between genes and MS “could revolutionize the way this disease is diagnosed and treated.” The society lists ongoing studies of this subject on its website, some of which are accepting participants. Might that be something that interests you? Plants are good, red meat is bad for MS, a study says The report titled “Diet rich in plant products linked to fewer symptoms in MS” is intriguing but, unfortunately, isn’t good news for me. I dislike most green vegetables and love red meat. The story confirms anecdotal reports I’ve read about for years from people with MS who swear that they’re helped by plant-based diets. To conduct the study reported on in this story, 163 people in Denmark completed at least three weeks of digitally recording what they ate each day. (Participants were asked to digitally record their food intake and symptoms daily over a period of 100 days; three weeks was the minimum set by study criteria.) Those on a plant-rich diet reported a reduction of 19%-90% of their symptom burden, compared with those eating red meat and processed meat products. It’ll be hard to teach this old dog new diet tricks. I don’t think I’d gain enough relief from MS symptoms in exchange for giving up a favorite food. But you might. Are you one of those who has benefited from a diet change? Please share in the comments below. Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun. Tags MS News Comments Charles Schroeder Hi Ed, I really enjoy your blogs. From what I have read, I believe you and I have a similar MS progression path. I am 71, and have moved on from RRMS to secondary progression. It is hard, because I used to be able to walk without assistance till I was 65. However, now I need a walker. Reply Charles Schroeder Continuing on - I suffer from spasticity at night. My legs spasm and kick every 20-30 seconds. It is quite painful - and prevents me from sleeping. Baclofen does not help. I only take gabapentin - 900 mg at night, 900 when I wake up. Do you have any suggestions? Reply Ed Tobias Hi Charles, Thanks for your note and I'm glad you like what I write. I have had legs that jumped, and sometimes spasmed, for years. Baclofen stopped helping and I switched to 1,000 mg of gabapentin before I go to sleep and it works most nights. I've also found that drinking water, regularly, seems to help, even though this seems contrary to the usual MS urinary problems. I actually think increasing my water intake a bit has helped reduce my overnight need to void. Ed Reply Diane Randall I'm excited to read about stem-cell research and progress in many areas of health, and of course for stopping MS in its tracks. I'm not a scientist but what I read gives me great hope, if not for myself, then for those younger and especially children and young adults. Reply Ed Tobias Hi Diane, It's been a long haul but I think we're getting closer and closer to halting MS. We're certainly much closer than when I was diagnosed in 1980! Ed Reply Brian Plant based foods sound good but they are made with high amounts of sodium. By not eating red meat might be good for ms-the high amount of sodium isn’t good for your heart! Reply Ed Tobias Hi Brian - I think the plant-based diet that's talked about here isn't processed meals. It's people doing their own cooking using plants. Where is the high sodium that concerns you coming from? Ed Reply Lloyd Swift Dr Roy Swank was all over the impact diet could have on prognosis, BEFORE the establishment was ready to listen to him!!! It's so important to do your own due diligence. Lloyd Reply Ed Tobias Hi Lloyd, No doubt, Swank has been around about 70 years. Wahls has been preaching a similar diet for ages. There's also Paleo and, more recently, Keto. Many people with MS swear by one of those diets. Yes, everyone with Ms should do the research and then decide what's best. Ed Reply Jeff I, for one, am adamant about diet. After many years of traveling, eating restaurant food, junk food, mostly out of lassitude or for convenience, I made a massive effort to clean up my diet (my motivation was a woman with MS who was into this). The woman didn't last but the diet did. It took much longer than six months, maybe a year, but one day, for what ever reason, I just FELT GOOD! Nothing special but I just felt good! Maybe you might call it a wholeness, a fullness in the chest. I can't say why, I can't give any reason, The only siginificant change was the diet, and I just felt good! So I stayed on it. Very, very simple diet. Rule ONE: EAT NOTHING advertised on TV! That's there to take your money not to make you healthy! That eliminates all the chemicals, preservatives, excess fat, salt, sugar, grease, etc, etc, etc! I bought a wok (the healthiest people in the world eat this way). Simple breakfast, two eggs scrambled with fruit and toast, lunch with yougurt with fruit, a big smoothie with spinach and kale and fruit. Stir fry about 2 ounces any protein (lean beef, chemical free chicken, shrimp, tofu, whatever). Add two or three vegetables all served over brown rice. Mix and match with anything that interest you with some sauce you create, and you have a tasty nutritious meal. Swap out with any fish, broiled or steamed. If you have to eat out order a big salad and be creative. The variations are unlimited. It's not really a diet but a different way of living. I've eaten this way for six or so years now. I feel so good I'd never go back! My MS is stable, my new doctor was surprised I was in such good health (in spite of the obvious) for someone about to enter his (gasp!) 71st year. But don't you do this; the economy would crash, the fast food joints would go out of business, and the doctors would have to get real jobs! What would they advertise on TV? Where would we be without all the food induced conditions they can claim to cure! Reply Ed Tobias Hi Jeff, Thanks for all of the very interesting info. You have, indeed, changed to a different way of living. I'm glad that it's worked so well for you but, I'm sure you realize, this would be a tough task for many, if not most, of us. On the other hand, I hope there are people here who might try it and be helped. So, a second thanks. BTW, I love your writing style. You should be columnist! Ed Reply Donald Wayne Dony Hi Ed, It is great to see articles about Stem cell treatments. I am 71 and have had PPMS for 10 years. I take core stem cell injections in Seattle once a year. The results are amazing. My ability to perform the same tasks such as walking, cycling, and balancing is almost the same as before I had the MS. I would definitely recommend cord stem cell injections. I hope this comment is helpful. Donald Reply Ed Tobias Hi Donald, Thanks for sharing that info and I'm very glad that you're doing so well. I've read very little about stem cell injections, as opposed to transfusions, and what I've read hasn't been very positive. May I ask where you are having this done? Ed Reply josephine Micallef My daughter is 60years old.She had been suffering from MS.since she was 46.Since then she got worse,although she was given many kinds of medicines.In fact she is in a wheel-chair.now.Before having the MS. she was a healthy,energetic and very intelligent.Looking always smart.As far as I know there was nobody in our family that had MS.What do you think is the cause? Could it be a virus?Thanks a lot in advance for reading my problem. Reply Ed Tobias Hi Josephine, I'm sorry about your daughter's MS problems. You probably know that scientists haven't found a cause for MS. However, there is research that indicates it may be related to the Epstein-Barr virus. So yes, there is a possibility that it could be a virus, of sorts. Here's a little more information about that: https://multiplesclerosisnewstoday.com/columns/2022/01/18/an-ebv-primer-for-people-with-ms/ Ed Reply Pop Vladut Iuliu Hi. This article is very interesting to me. I too have MS since the age of 20! Now I'm 36 and I'm still with RRMS, but I can no longer move for fear alone because I have no balance, so I sit on the frame and my mother pushes me to the bathroom, for example, and I very rarely go outside for fresh air. besides these problems, I can't control my bladder, I often see double vision, my left hand and left leg are very weak, although the right side helps me a lot, and if I want to write with a pen it's impossible, so this is where I draw, etc., but it's good that at least I can eat very easily! Now my question is what do you think is worth trying this treatment? Reply Ed Tobias Hi Pop Vladut luliu, I'm sorry that your MS problems are so serious. But, I'm really not qualified to tell you whether it's worth it to try any treatment. That's a decision for you and your neurologist to make. It might help you, as you have that discussion, to know that studies have shown that aHSCT is most successful when it's used early after being diagnosed and when the MS is in its early stages. I wish you the best, Ed Reply Indu I'm curious about the diet suggestion. I've heard this from a number of sources - about adopting a plant based diet, a pescatarian mediteranean diet, the keto diet ... all sorts. The consisitent things I notice is that different diets seem to work for differnt people, and when people say they feel good on a particualr diet, I am curious to know whether they are also on meds, and what their blood group is. If you're on meds, then how do you know that it's the diet or the meds making you feel better? Blood groups are interesting to me because I also wonder about the efficacy of hte blood group diet.... Reply Ed Tobias Hi Indu, You raise some very interesting questions and I hope some readers here, who have used diets, will respond to you. There's no doubt that, just as MS treats everyone a bit differently, we will respond differently to medications and diets. Ed Reply Katie My suspicion is that it's not so much that different people respond to different diets biologically, but that every single one of the diets listed here and that have been studied in conjunction with MS is a whole-food/low processed food diet. I suspect it's the lack of inflammation-causing processed foods that's helping, because studies show that all of those diets (Swank, Paleo, Mediterranean) are better than the average American diet. The one thing those diets all have in common, when compared to the standard American diet, is very low processed food content. I've tried a few of them and I definitely notice that I feel better when I eat a lot of plants, very little processed food, and very little sugar. Reply Alison R Blamer Just had to say that I have always belived it is in our family genes. Myself, 1 sister the other has a daughter with it. Plus a first cuz., and a second cuz/, and I am thinking 2 of my 3 kids may have. They will not get tested! I have tried to get dr. to ck blood from others in Family but never an answer. It is too bad and I hope they fiqure out soon. I do not want my kids and grandkids to suffer because the medical fields only wants proof from a scientist. Reply Mary Ellen Mulvey Please encourage your kids to see a neurologist for MS testing (MRI). I experienced symptoms for 5 years and, despite seeing multiple doctors, was diagnosed after much damage was done to my spinal cord. The new treatments are very effective in controlling lesion load. Always better to know what you are dealing with!! Reply Ed Tobias Hi Alison, I'm sorry so many in your family have MS. I'd certainly encourage your children, who you suspect may have MS, to be looked at by a neurologist specializing in MS. If they have it the sooner they can be treated the more likely it is it can be controlled. Ed Reply nancy russo My daughter had HSCT in Pueblo, Mexico and her group had great results. I would encourage anyone with MS to do it as soon as possible. We did a "Go-Fund-Me" to help with expenses. It is a crime it's not available in the US as it is in many countries. Reply Ed Tobias Thanks for your comment, Nancy. I agree that it should be more readily available to people with MS and should be covered by their insurance. Ed Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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