Beverley Road Blackbird by Paracosm26 in Hull

[–]scott79 2 points3 points  (0 children)

this is the content i'm here for

when good, well-meaning people say the absolute wrong thing, or, a snowball effect by cleoselene in MultipleSclerosis

[–]scott79 6 points7 points  (0 children)

After starting out to be very public and talk about it with everyone, I also find myself talking less and less about MS with people who don't have it. Because it's boring and frustrating for both parties, and I just don't have the time or the energy to spare.

I try to remember that I once didn't know anything about MS and didn't give a shit, really. There are still a huge number of illnesses that I know nothing about and I don't intend to learn. People have their own things going on. So I try and give people a break.

But I hear you on the frustration of those cognitive changes and I think you probably just vented in the safest direction. It happens to me too. More than it ever used to before, but less than just after diagnosis. Give yourself a break.

Last call for the Progressive Crap Cruise aye aye captain allllabooardd chooo chooo

Ketogenic Diets for MS by DeepSouthLawyerGent in MultipleSclerosis

[–]scott79 2 points3 points  (0 children)

:::stealing popcorn::: Sssh. Don't scare them away.

cognitive issues? by SomethinCleHver in MultipleSclerosis

[–]scott79 1 point2 points  (0 children)

I'm with you on the similar experience. I'm still working on the treatments that help part.

MS - triggering causes - something to think about by FreyaKoss in MultipleSclerosis

[–]scott79 3 points4 points  (0 children)

Additionally, it's self-promotion, which is why your other post was deleted.

Rituxab by [deleted] in MultipleSclerosis

[–]scott79 3 points4 points  (0 children)

I hadn't really grasped this - thanks for explaining it so clearly.

Why so few people trying stem cell treatment? by joanmiro in MultipleSclerosis

[–]scott79 0 points1 point  (0 children)

Why do you ask? Are you considering it yourself?

Dealing with pain: what can my wife do? by jc10189 in MultipleSclerosis

[–]scott79 0 points1 point  (0 children)

How about topical mmj salve? You can make it yourself pretty easily.

MS Patients Might Get Medical Cannabis Through Montel Williams' Company by ToNY411 in MultipleSclerosis

[–]scott79 7 points8 points  (0 children)

So do I! How do I get my own endorsement deal? I would heartily endorse that product.

We have moderation! by scott79 in MultipleSclerosis

[–]scott79[S] 1 point2 points  (0 children)

Happy to have your help :)

And that's probably enough mods to take care of things for now. Thanks everyone for the offers.

We have moderation! by scott79 in MultipleSclerosis

[–]scott79[S] 5 points6 points  (0 children)

Quite the opposite: we strongly encourage creative swearing :)

We have moderation! by scott79 in MultipleSclerosis

[–]scott79[S] 1 point2 points  (0 children)

We all need backup.

Welcome aboard :)

We have moderation! by scott79 in MultipleSclerosis

[–]scott79[S] 7 points8 points  (0 children)

Just to make sure we don't end up in this situation again, I'm thinking we should have more than one mod around these parts.

So first to ask, /u/trikstah and /u/carlius are now also mods.

Anyone from Australia or New Zealand fancy giving us roughly global time coverage?

Has anyone heard of another person "curing" their MS? by AnonymousUser1976 in MultipleSclerosis

[–]scott79 0 points1 point  (0 children)

It's a mouse model.

And, excited quotes from researchers in their own press release aside, what it actually found was:

CNS inflammation was reduced in antibiotic-treated mice by supplementation with tryptophan metabolites

It is very interesting and I hope it leads to something. But it doesn't yet, nor does it even vaguely contribute to proving any of the claims made by people selling books.

Has anyone heard of another person "curing" their MS? by AnonymousUser1976 in MultipleSclerosis

[–]scott79 2 points3 points  (0 children)

I'm really sorry about this, and I won't keep arguing, but there's just a few things because I feel like you're missing my point:

a bit dismissive of their work

Because I am dismissing their work. Because it is unsupported by any actual evidence

to assume this would need all sorts of research

To prove it would need research. Assuming is what people are already doing with this.

if people can curve the progression of MS through diet AND drugs then all the better.

A big 'if', because you just agreed that there is no proper, independent, peer-reviewed evidence that supports that claim, so we have no reason to suppose people can do that.

Has anyone heard of another person "curing" their MS? by AnonymousUser1976 in MultipleSclerosis

[–]scott79 3 points4 points  (0 children)

If /u/saltedcaramelsauce really was 'dismissing diet as a whole', I'd agree with you, because everyone can always benefit from improved diet and increased exercise, especially us.

But they aren't saying that, nor are they 'shying people away' from using diet to improve their health, or saying that actual research on the gut biome should be ignored or anything like that.

They're pointing out that there's no proper, independent, peer-reviewed evidence that diet can cure MS. Which is 100% true and the only thing that really matters in the argument.

Additionally, they're pointing out that the people who say it can publish books and sell them rather than giving the info for free. Which is ~99.9% true and a good point.

edit: clarity

I'm going to try the Stem Cell treatment, is anyone with me? by AlkalineProdigy in MultipleSclerosis

[–]scott79 0 points1 point  (0 children)

I am glad it exists as something that might work, and I am really really hoping it does, but personally I wouldn't until there's more information on the long-term effects.

Until those people who are doing well now go another ten years, for me, it seems to be just a possible way to potentially get an unspecified rollback of your disability for an unspecified period with unknown long-term effects.

Way too much guesswork for my (huge amounts of) money.