111–120 of 141 posts
Please edit the title to fully spell out Multiple Sclerosis. At first I thought what does Microsoft have to do with nerve coatings?
> Metformin seems to work by rejuvenating stem cells in the central nervous system, which then go on to become myelin-producing cells called oligodendrocytes. These churn out fresh myelin to replace that destroyed by MS I have small fibre neuropathy, which has left me with constant pain. There are basically no treatments available beyond pain control, except for maybe IVIG treatments (there have been some papers show…
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I am in no way an expert, which makes me very hesitant to answer these sorts of questions. I am a random person on the Internet. Take that into account when you read what I've written, and weigh it very skeptically. My knowledge comes from my own health. I was diagnosed with fibromyalgia (which is probably not an autoimmune disease. Probably.), after a ten year long process. MS was the other diagnosis being considere…
IME, many doctors, and even some consultants, use fibromyalgia as a catch-all where there is chronic pain and fatigue, but they can't find the underlying cause - basically a big umbrella to cover what are likely a broad spectrum of diseases and health issues. I suffer from chronic pain and fatigue, and was previously diagnosed with fibromyalgia by both a rheumatologist and a neurologist, despite not even meeting the…
That is very much not myself. I meet all the diagnostic criteria, and regularly experience somewhere around a hundred of the two hundred known symptoms. There is not another illness that matches my symptoms as well as fibromyalgia. I am a case study in what FM looks like at its very worst (literally, I've been featured in several journals as a case study).
I went through a variety of nerve studies before the diagnosis was made, and they're functioning perfectly. Including multiple biopsies. Getting the FM diagnosis is not easy where I live, most specialists would rather send you away with no diagnosis than that one. I met the criteria for FM on day one, and went through a decade of being tested for absolutely everything else.
The propensity for overdiagnosis, in some nations, of FM, causes me no end of pain whenever I raise the illness. There is always someone who feels the need to tell me that they believe it doesn't exist, or think that I must have something else that has gone undiagnosed, or think that they can suddenly cure it. That's exactly why I don't talk about it in detail. People think that they're helping, especially if they're empathetic. But all it does is undercut the last fifteen years. It makes the suffering more... Lonely. I can appreciate the sentiment, but I've never been able to appreciate the gesture.
I do expect that somewhere in the future FM will be split into several different types, and even illnesses. The illness is extremely "young", it got its name in 1993 (30-40 years younger than MS). Most of the illness is a total unknown at this point in time. There's no real global agreement as to what kind of illness FM is. It gets called autoimmune, neurological, rheumatoid, etc. depending on where you live. The evidence is currently leaning towards neurological, as FM has markers in the white matter of the brain that are unique to those who suffer from it. But we'll probably need another decade or two to be certain about that.
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Looks similar to AIP diet. All anti inflammatory foods
I’m not convinced these diets work as advertised.. I’ve read tons of scientific papers and there are too many contradictions. For example these diets tend to forbid gluten intake, but some research imply better outcomes for patients with high whole grain intake. I’ve also read that inflamation is useful for preventing cancer, so what good is not having relapses when you get cancer from all the anti imflammatory stuff…
Dietary science is full of contradictions, and sometimes contra-indications.
There seems to be a lot of focus on some sort of mythical one size fits all diet for everyone. As if everyone's body systems would react in the same way to any given diet and with an assumption that you can rigidly control the ingredients in your food while still getting food from the grocery store and possibly restaurants.
When evaluating diets for conditions, I would suggest trying to figure out:
a) is it grossly unhealthy / what signs could I use to see if it is affecting my health negatively? b) does it seem to work for some people? c) is it something I could feel satisfied with for a long time? d) how will I know if it's working or not? / how will I be able to confirm?
This is generally a smaller burden of proof than is there scientific consensus that it's a good idea. For many things that might have a connection to food, there isn't consensus on the mechanisms involved, and there may be multiple. It's plausible thst some mechanisms would be affected by diet, and others wouldn't, so some people would see good results by eliminating things, others would see no change, and others may have bad results.
I am on Ocrevus myself to treat MS. I have RRMS. I've been on Ocrevus now for a little over 8ish months! I really like Ocrevus... haven't really had any side effects or infusion reactions.
I look FORWARD to more remyelination news and research!!!
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The thing is honestly, we make incredible progress every decade. What's important is doing it carefully, correctly, and investing in the right areas to make real positive change (less viagra and hair loss probably). Just a decade ago, Hepatitis C wasn't curable in nearly 100% of patients (in 12 weeks with limited side effects!). It isn't great news cycle content to focus on rehashing the great achievements we have re…
Here’s the story about the accidental discovery of Viagra. https://www.theguardian.com/lifeandstyle/2017/jul/11/from-vi... For some reason, every time this discussion happens, people think we spend a lot of research money on hair loss and impotence drugs. Next, move onto how much care for people with Alzheimer’s is costing: https://www.cbsnews.com/news/alzheimers-costs-americans-277-... It would be cheaper to invest…
Did follow-up studies for that ever happen? Was it affirmed/refuted?
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I’m not convinced these diets work as advertised.. I’ve read tons of scientific papers and there are too many contradictions. For example these diets tend to forbid gluten intake, but some research imply better outcomes for patients with high whole grain intake. I’ve also read that inflamation is useful for preventing cancer, so what good is not having relapses when you get cancer from all the anti imflammatory stuff…
Are you deep in biology like with a minimum BS or higher degree? If not, might just be too difficult to understand the value of the ideas. The lady prescribing the Wahls protocol is an MD so has a lot more invested into the field than the layperson. That said, she could still be wrong. One thing is for sure, there is no one-size-fits-all and there is no magic bullet. If there's something helpful for one condition, it…
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My niece has aggressive MS and Ocrevus didn't help. CRSPR is the true dream. No more MS.
How would CRISPR prevent MS? Autoimmune diseases seem a poor fit.
MS seems to be caused by some unknown combination of environmental factors, and genetics.
You fix the bad genes, and you may become immune.
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That's not the average now, though - especially not for someone taking medication. If folks ever even need a wheelchair, that is often temporary. It is so much more common to use other walking aids, if you need them at all. And this is still factoring in folks that aren't taking medications and are older and couldn't start on treatments early. This is all changing: People are getting diagnosed earlier than they were…
I am male, which accelerates the progression. But that was what my doctor told me in 2012 for men, even if taking interferon (which I did). And the two big new ones since. I stayed basically great until 2017. But now both hands are mostly numb and my leg is numb. I've taken the best medication available at every opportunity. Now it's progressive. I'm 37 and was diagnosed and treated very early after just one mild att…
Did you find any (even anecdotal) correlation between some cause and the result of your disease transforming into progressive?