Through stress of divorce and high pressure job, my MS progressed rapidly requiring a cane, orthotic foot brace, then giving up driving and using a Rollator.
After multiple false positives for JC virus while on Tysabri, I switched to fingolimod, and followed neurologist’s advice to stop working. I saw Dr Terry Wahls’ TED talk on keeping brain mitochondria healthy to avoid disability in auto-immune conditions. I researched various MS diets and advice. I heard from friends in various countries with auto-immune conditions (vitiligo, rheumatoid arthritis, psoriatic arthritis) that they were advised to avoid dairy. Given that there is limited occurrence of auto-immune conditions in countries and cultures where they eat little or no dairy products, I limited it in my own diet.
I now eat a mostly vegetarian diet, full of colourful vegetables, nuts, grass fed beef and lamb, fatty fish. I take nutrient supplements recommend for mitochondrial maintenance. I do Pilates twice per week, and walk my small dog daily. In the three years since starting this lifestyle, I have had no new brain lesions, I am able to stand longer, and walk farther. My balance has improved. The Pilates exercises I could barely do are easy now. I have found if I don’t exercise daily, my mobility suffers, I have more aches, pains, stiffness, and weakness. It is my full-time occupation to maintain my health.
I feel much better physically, but I also struggle with the fact my life is limited - socially, professionally, and financially.
This all rings true for me. Part of “feeling old” is overwhelming exhaustion now, and at almost 70, I AM old! As luck of the genetics would have it, it’s demoralizing, not complementary, to hear “you look great!” I started DMT shortly after diagnosis in my early 40s, though, and I recommend that to any newly diagnosed pwMS. I am still able to walk with a cane alternating with a rollater. In the last 5 years, I have no active disease, yet I just had a relapse complete with migraine. Over the years, I have consistently exercised and tried every diet that was out there. I now follow a simple Mediterranean diet. I’ve also tried supplements. I’ve found that supplements other than the usual vitamins (primarily C, B and D) were of little use. The most frustrating thing for me is actual brain performance in terms of reading and higher brain processing, which is depressing to me. That’s how I made my living and still help people. I’m forcing myself to read, read read. Books, writings. The computer is pure dizziness because of nystagmus and vertigo as well. Those are tough, as are various dystonias. Is some or much of this age related? I wouldn’t doubt it. To the newly diagnosed, I’d get on a good medication immediately, eat healthily, exercise as best you can and treat yourself kindly! You are your priority.
If premature ageing means you can’t run a marathon or do yoga then I have always been prematurely old. I think we have unrealistic expectations of what is normal for people with and without Ms and expect eating a lot of vegetables will allow us to live a very long time. Unfortunately there are many things that will make us feel old, disappointment and grief being the most unavoidable. There is something exhausting about our quest for eternal youth and health and maybe happiness lies in not measuring ourselves continuously and finding ourselves wanting but in acceptance of our mortality, when ever that may be.
I fall into that patients category clinically and physically. When looking at my parents and extended family
I look to be aging physically much faster.
Hair loss, graying, earlier menopause..I just look much older ( feel older ) even though I’m doing everything I can to help in the fight with MS. Exercise, no alcohol, healthy diet…
Wish the science had been around earlier so many of us older folks could have benefited. I’m hopeful that our children and grandchildren can benefit from your research!
A little late here. I think back to being told I probably had MS after double vision and an X-Ray, about 35 years ago. A much different MS world today. What I was most interested in was what was going to happen to me, no different than today I suppose. There were bee stings, Swank diet and steroids. Much better selection of treatments today! The odds were in my favor- I was not going to die, probably. But I did watch an MS Society video chronicling someone in bed who did die, finally unable to move. Sad and scary. What helped me was “jumping in” and not burying my head in the sand. Exposing myself to real life unpleasant info, support groups and wheel chairs.
I am aware like most, of the basic fundamentals of healthy lifestyle and early DMT. That’s the word I spread, and the question does come to me now and then. But here’s the question…
We have the stats from history about how MS goes, prior to DMT’s. What is the corresponding data? I almost feel dumb asking. It should be made simple, and I hope it is, so a new person is told “average lifespan with treatment is x; without y”. Average range and severity of disease without treatment is X, at death, with treatment then y. It should not be a mystery, incalculable or something unable to understand without a degree.
If it isn’t this clear yet, and many are getting along like your case study, and me too, apparently, for 23 years on Betaseron and with antibodies at least at one point (you did the study with the negative conclusion on that one, Dr. G), well, maybe the naysayers have a point (?). Do nothing?
This is what I did- Swank diet strict for the first 7 years. Removed all amalgams. Intravenous steroids within 5 days of any new attack, and Betaseron as soon as it came out (tested + antibodies 10 years later but if it’s not broke, don’t fix it).
I don’t know what worked for me. It was bad, all the typical symptoms, and it simmered down. It is still simmered down at 64. Nothing new on MRI for 20 years. Probably a little worse off, but nothing like what it could have been. The social/work side of things was much worse. Only on Alpha Lipoic Acid (what the heck?) now, and ½ experimental dose Simvastatin (on it anyway, I’m a small guy, maybe a dose effect?).
I am not a pessimist,but I am a pragmatist. I don’t see what the point is for going forward hoping for any help when I already have extensive disability, and I don’t seem to have active disease anymore. I also have aged twenty years since Dx. I asked research professors at the University of California, Irvine stem cell lab in 2005 about using stem cells to repair damage from multiple sclerosis, and they told me they were pretty hopeful that it could be done someday. I asked an assistant in the lab if they were talking about like 15 - 20 years and he told me, "no, more like fifty… or more." That was seventeen years ago. I don’t really have another 33 years to wait to see if I can get neurological repair so that I may get up again from being bed bound. The last ten to twelve years have been a waste of time, as I was telling my neurologist that I was constantly getting worse while I was on different DMTs and my Dx changed three times—RRMS, PPMS, PRMS—and I was also diagnosed in 2006 by a protege of a highly respected MS researcher as SPMS. She also added, "I am very sorry, but we can’t treat you." I eventually went on Tysabri a few years later and it seemed to help, but it was only my imagination as the drug only slowed deterioration a tiny bit, and I ended up bed bound three years later after stopping it for high risk of PML. There were so many things the doctors didn’t tell me, and so many things they didn’t explain well enough for me to slow down or arrest the disability. Like the fact that 30 minutes of physical therapy five times a week is not enough because able-bodied people are constantly moving almost every part of their body every day. But we all don’t realize it because we don’t pay attention to it moment by moment. But the firing of those cells is constant in life and the communication never stops or slows down or falters. Unless of course you have MS, or another degenerative neurological disease.
So I don’t see what is the point of going on more drugs where I have to worry about developing comorbidities, and all the constant testing and other things that really go nowhere. My life already sucks enough and there’s so many things I can’t do or enjoy anymore. And I lost so many years to chasing after therapies to slow the disease down… I spent all my time working on trying to slow down or arrest something that wasn’t slowing down or stopping. The best years of my life flew by and are now just a Post-it note. The disease is horrid and with some people it just doesn’t care what you do to stop it it’s going to attack you even harder.
Someone recently diagnosed nowadays has a fighting chance with some of the new drugs available. But if anyone is waiting for a miracle drug to stop MS and its tracks, or therapies or drugs to repair damage and gain some ability back, or four stem cell therapy to achieve the same thing, i’m sorry but you will be sorely disappointed. There’s still a long way to go on that front.
I became vegan for 18 months which really gave me a project when I was at my all time low
Now I follow intermittent fasting, I maintain a low body weight and BMI of 18. I am an nHS consultant and have a high pressure job. I’m learning a language and take classes in many things to keep my brain active
I’m v active and work out every day really hard
Use it or lose it is my moto and I follow this daily
Dr. G. These non-DMT taking patients you highlight who exhibit Smouldering MS, were they holistically managing their condition? In other words, were they exercising daily, eating an anti inflammatory diet, learning new things daily, consuming healthy fats daily, supplementing D3 and B12? If they had made no changes to their lifestyle, then of course they would be smouldering away. Most Americans smoulder away due to the standard American diet and lifestyle.
Without that information, your article is not very helpful or actionable for PWMS.
But I do so appreciate all that you do!
Also, I took part at UCSD in a clinical study of the biological age of PWMS. My blood labs stated I was 6 years biologically younger than my chronological age (47 vs 53) Am I am outlier?
Thank you for posting this. The topic of aging and MS - especially what behaviors we can engage in - is neglected and overlooked. I would also like to emphasize the importance of sleep in this as our ability to sleep also deteriorates with age and insomnia is even more present. PwMS are often told that sleep is important and that it is important to get good sleep, but seldom are pwMS and insomnia offered any more sophisticated behavioral advice than sleep hygiene advice. These advice are well intended, but often they don't really have a large effect once insomnia has taken hold. I think a good trial of cognitive behavioural therapy for insomnia in pwMS could be very important - in fact I'm starting one.
I also have a question related to the CSF neurofilament light chain levels that you mention are normal: Do you (or anyone else) know what the normal range is?
Hmm, looking at how I move I am definitely much older than my age… The article sounds like it is aiming to promote urgency of faster treatment for newly diagnosed PwMS by showing what a hopeless position current MSers are in if they are older… This has left me rather sad being 44 and getting gradually less able.
I spent 2 years in Poitiers, 2 years in Paris. A long time ago. So many great sauces, creams, pastries and meat there! How are your MRIs? You sound very empowered!
Prof, you mention the sizomus trial for this patient but if assigned to the study drug (66% chance) then this does not extend beyond the 2 year treatment period. Is the hypothesis that this period will be sufficient to purge the CNS of plasma cells?
Why not at least check if she has any symptoms that are treated with sodium channel blockers and use that as an excuse to put her on lamotrigine? As she is elderly, she probably qualifies for simvastatin solely on the basis of her metabolic health, so why not prescribe simvastatin? Will you really claim that you wouldn’t do this for yourself if you received her diagnosis? Please do something instead of just watching her deteriorate.
Hi Prof G, bit of a random one but would be very interested to know your thoughts on taking a fungi supplement to assist this premature aging process in Pwms. Aware there hasn't been any trials but watching Fantastic Fungi on Netflix got me thinking !
This is much like what is happening to me. No dmt for 40 years (there weren’t any in the 70s) and then it came back in my late 50s. Four years later lots of sensory problems, urinary as well, I was put in interferon. I’ve always exercised, done yoga & meditation to keep stress away. I eat a vegan diet. These things help day to day. I’m challenging my brain by doing a second Masters (creative writing) so that I can write that book before my brain goes to mush! I asked the neurologist why the pain is progressing so fast and she said it had to do with age and my body not being able to hold it off any longer. 🙁
Through stress of divorce and high pressure job, my MS progressed rapidly requiring a cane, orthotic foot brace, then giving up driving and using a Rollator.
After multiple false positives for JC virus while on Tysabri, I switched to fingolimod, and followed neurologist’s advice to stop working. I saw Dr Terry Wahls’ TED talk on keeping brain mitochondria healthy to avoid disability in auto-immune conditions. I researched various MS diets and advice. I heard from friends in various countries with auto-immune conditions (vitiligo, rheumatoid arthritis, psoriatic arthritis) that they were advised to avoid dairy. Given that there is limited occurrence of auto-immune conditions in countries and cultures where they eat little or no dairy products, I limited it in my own diet.
I now eat a mostly vegetarian diet, full of colourful vegetables, nuts, grass fed beef and lamb, fatty fish. I take nutrient supplements recommend for mitochondrial maintenance. I do Pilates twice per week, and walk my small dog daily. In the three years since starting this lifestyle, I have had no new brain lesions, I am able to stand longer, and walk farther. My balance has improved. The Pilates exercises I could barely do are easy now. I have found if I don’t exercise daily, my mobility suffers, I have more aches, pains, stiffness, and weakness. It is my full-time occupation to maintain my health.
I feel much better physically, but I also struggle with the fact my life is limited - socially, professionally, and financially.
This all rings true for me. Part of “feeling old” is overwhelming exhaustion now, and at almost 70, I AM old! As luck of the genetics would have it, it’s demoralizing, not complementary, to hear “you look great!” I started DMT shortly after diagnosis in my early 40s, though, and I recommend that to any newly diagnosed pwMS. I am still able to walk with a cane alternating with a rollater. In the last 5 years, I have no active disease, yet I just had a relapse complete with migraine. Over the years, I have consistently exercised and tried every diet that was out there. I now follow a simple Mediterranean diet. I’ve also tried supplements. I’ve found that supplements other than the usual vitamins (primarily C, B and D) were of little use. The most frustrating thing for me is actual brain performance in terms of reading and higher brain processing, which is depressing to me. That’s how I made my living and still help people. I’m forcing myself to read, read read. Books, writings. The computer is pure dizziness because of nystagmus and vertigo as well. Those are tough, as are various dystonias. Is some or much of this age related? I wouldn’t doubt it. To the newly diagnosed, I’d get on a good medication immediately, eat healthily, exercise as best you can and treat yourself kindly! You are your priority.
Thank you Prof G.
If premature ageing means you can’t run a marathon or do yoga then I have always been prematurely old. I think we have unrealistic expectations of what is normal for people with and without Ms and expect eating a lot of vegetables will allow us to live a very long time. Unfortunately there are many things that will make us feel old, disappointment and grief being the most unavoidable. There is something exhausting about our quest for eternal youth and health and maybe happiness lies in not measuring ourselves continuously and finding ourselves wanting but in acceptance of our mortality, when ever that may be.
I fall into that patients category clinically and physically. When looking at my parents and extended family
I look to be aging physically much faster.
Hair loss, graying, earlier menopause..I just look much older ( feel older ) even though I’m doing everything I can to help in the fight with MS. Exercise, no alcohol, healthy diet…
Wish the science had been around earlier so many of us older folks could have benefited. I’m hopeful that our children and grandchildren can benefit from your research!
A little late here. I think back to being told I probably had MS after double vision and an X-Ray, about 35 years ago. A much different MS world today. What I was most interested in was what was going to happen to me, no different than today I suppose. There were bee stings, Swank diet and steroids. Much better selection of treatments today! The odds were in my favor- I was not going to die, probably. But I did watch an MS Society video chronicling someone in bed who did die, finally unable to move. Sad and scary. What helped me was “jumping in” and not burying my head in the sand. Exposing myself to real life unpleasant info, support groups and wheel chairs.
I am aware like most, of the basic fundamentals of healthy lifestyle and early DMT. That’s the word I spread, and the question does come to me now and then. But here’s the question…
We have the stats from history about how MS goes, prior to DMT’s. What is the corresponding data? I almost feel dumb asking. It should be made simple, and I hope it is, so a new person is told “average lifespan with treatment is x; without y”. Average range and severity of disease without treatment is X, at death, with treatment then y. It should not be a mystery, incalculable or something unable to understand without a degree.
If it isn’t this clear yet, and many are getting along like your case study, and me too, apparently, for 23 years on Betaseron and with antibodies at least at one point (you did the study with the negative conclusion on that one, Dr. G), well, maybe the naysayers have a point (?). Do nothing?
This is what I did- Swank diet strict for the first 7 years. Removed all amalgams. Intravenous steroids within 5 days of any new attack, and Betaseron as soon as it came out (tested + antibodies 10 years later but if it’s not broke, don’t fix it).
I don’t know what worked for me. It was bad, all the typical symptoms, and it simmered down. It is still simmered down at 64. Nothing new on MRI for 20 years. Probably a little worse off, but nothing like what it could have been. The social/work side of things was much worse. Only on Alpha Lipoic Acid (what the heck?) now, and ½ experimental dose Simvastatin (on it anyway, I’m a small guy, maybe a dose effect?).
I am not a pessimist,but I am a pragmatist. I don’t see what the point is for going forward hoping for any help when I already have extensive disability, and I don’t seem to have active disease anymore. I also have aged twenty years since Dx. I asked research professors at the University of California, Irvine stem cell lab in 2005 about using stem cells to repair damage from multiple sclerosis, and they told me they were pretty hopeful that it could be done someday. I asked an assistant in the lab if they were talking about like 15 - 20 years and he told me, "no, more like fifty… or more." That was seventeen years ago. I don’t really have another 33 years to wait to see if I can get neurological repair so that I may get up again from being bed bound. The last ten to twelve years have been a waste of time, as I was telling my neurologist that I was constantly getting worse while I was on different DMTs and my Dx changed three times—RRMS, PPMS, PRMS—and I was also diagnosed in 2006 by a protege of a highly respected MS researcher as SPMS. She also added, "I am very sorry, but we can’t treat you." I eventually went on Tysabri a few years later and it seemed to help, but it was only my imagination as the drug only slowed deterioration a tiny bit, and I ended up bed bound three years later after stopping it for high risk of PML. There were so many things the doctors didn’t tell me, and so many things they didn’t explain well enough for me to slow down or arrest the disability. Like the fact that 30 minutes of physical therapy five times a week is not enough because able-bodied people are constantly moving almost every part of their body every day. But we all don’t realize it because we don’t pay attention to it moment by moment. But the firing of those cells is constant in life and the communication never stops or slows down or falters. Unless of course you have MS, or another degenerative neurological disease.
So I don’t see what is the point of going on more drugs where I have to worry about developing comorbidities, and all the constant testing and other things that really go nowhere. My life already sucks enough and there’s so many things I can’t do or enjoy anymore. And I lost so many years to chasing after therapies to slow the disease down… I spent all my time working on trying to slow down or arrest something that wasn’t slowing down or stopping. The best years of my life flew by and are now just a Post-it note. The disease is horrid and with some people it just doesn’t care what you do to stop it it’s going to attack you even harder.
Someone recently diagnosed nowadays has a fighting chance with some of the new drugs available. But if anyone is waiting for a miracle drug to stop MS and its tracks, or therapies or drugs to repair damage and gain some ability back, or four stem cell therapy to achieve the same thing, i’m sorry but you will be sorely disappointed. There’s still a long way to go on that front.
I follow this blog avidly
I became vegan for 18 months which really gave me a project when I was at my all time low
Now I follow intermittent fasting, I maintain a low body weight and BMI of 18. I am an nHS consultant and have a high pressure job. I’m learning a language and take classes in many things to keep my brain active
I’m v active and work out every day really hard
Use it or lose it is my moto and I follow this daily
Dr. G. These non-DMT taking patients you highlight who exhibit Smouldering MS, were they holistically managing their condition? In other words, were they exercising daily, eating an anti inflammatory diet, learning new things daily, consuming healthy fats daily, supplementing D3 and B12? If they had made no changes to their lifestyle, then of course they would be smouldering away. Most Americans smoulder away due to the standard American diet and lifestyle.
Without that information, your article is not very helpful or actionable for PWMS.
But I do so appreciate all that you do!
Also, I took part at UCSD in a clinical study of the biological age of PWMS. My blood labs stated I was 6 years biologically younger than my chronological age (47 vs 53) Am I am outlier?
Thank you Dr. G!
Thank you for posting this. The topic of aging and MS - especially what behaviors we can engage in - is neglected and overlooked. I would also like to emphasize the importance of sleep in this as our ability to sleep also deteriorates with age and insomnia is even more present. PwMS are often told that sleep is important and that it is important to get good sleep, but seldom are pwMS and insomnia offered any more sophisticated behavioral advice than sleep hygiene advice. These advice are well intended, but often they don't really have a large effect once insomnia has taken hold. I think a good trial of cognitive behavioural therapy for insomnia in pwMS could be very important - in fact I'm starting one.
I also have a question related to the CSF neurofilament light chain levels that you mention are normal: Do you (or anyone else) know what the normal range is?
Hmm, looking at how I move I am definitely much older than my age… The article sounds like it is aiming to promote urgency of faster treatment for newly diagnosed PwMS by showing what a hopeless position current MSers are in if they are older… This has left me rather sad being 44 and getting gradually less able.
Yes I believe ms caused my premature menopause.
I spent 2 years in Poitiers, 2 years in Paris. A long time ago. So many great sauces, creams, pastries and meat there! How are your MRIs? You sound very empowered!
Prof, you mention the sizomus trial for this patient but if assigned to the study drug (66% chance) then this does not extend beyond the 2 year treatment period. Is the hypothesis that this period will be sufficient to purge the CNS of plasma cells?
Why not at least check if she has any symptoms that are treated with sodium channel blockers and use that as an excuse to put her on lamotrigine? As she is elderly, she probably qualifies for simvastatin solely on the basis of her metabolic health, so why not prescribe simvastatin? Will you really claim that you wouldn’t do this for yourself if you received her diagnosis? Please do something instead of just watching her deteriorate.
Hi Prof G, bit of a random one but would be very interested to know your thoughts on taking a fungi supplement to assist this premature aging process in Pwms. Aware there hasn't been any trials but watching Fantastic Fungi on Netflix got me thinking !
This is much like what is happening to me. No dmt for 40 years (there weren’t any in the 70s) and then it came back in my late 50s. Four years later lots of sensory problems, urinary as well, I was put in interferon. I’ve always exercised, done yoga & meditation to keep stress away. I eat a vegan diet. These things help day to day. I’m challenging my brain by doing a second Masters (creative writing) so that I can write that book before my brain goes to mush! I asked the neurologist why the pain is progressing so fast and she said it had to do with age and my body not being able to hold it off any longer. 🙁