Last reply 4 days ago
HSCT? Special diets?

Hello, i’m new on here, only recently diagnosed.

Apologies if these topics have been covered already…

Has anyone gone for or know of anyone who has gone for a HSCT treatment (UK trial or privately abroad) and seen good results?

Most of the DMT’s i’m likely to be offered initially have a 30%- 50% success rate?

Have any of you seen good results on any special diets such as Wahls protocol, BBD, or OMS? Or supplements?

I hope as I get more experience on these topics I can be of help to others on here with similar questions. I’m very grateful this platform exists! 🙂

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stumbler
6 days ago

@amyx ,

I have added an “HSCT” tag at the foot of your post above. Selecting this tag will locate previous conversations on this topic. You might also want to read the following, from a BBC correspondent, who went to Mexico for this procedure:

https://www.bbc.co.uk/news/resources/idt-sh/caroline_wyatt_multiple_sclerosis.

As far as diets are concerned, it’s “horses for courses”. What works for one, will not work for another. So. it’s trial and error.

There’s only anecdotal evidence that it has a positive effect on MS progression. As a healthier diet, it can give you the “feel good factor”, which can only better your entire wellbeing.


itsmewithms
6 days ago

There are many that say “if you do this one thing” your MS will improve or disappear. I think we all like simple answers but I don’t think MS is that easy. I take an effective DMT (Ocrevus) eat a clean diet (more towards Paleo or “clean”) and make sure to do light exercise/stretch at least an hour a day. Of course there are also supplements (D3, Mg, fish oil, Hi Cap C and some more for brain health, etc.) and more importantly avoid stress and make sure to get as much sleep as your body will give you.

Welcome on board, we welcome your comments and contributions. You will find a lot of people pushing diets or cures so use your judgement and be watch that every time you do a google search you will be barraged by more groups trying to sell you their cure ;-0 There may be bits and pieces to learn and apply from each of them. One that I have looked into some and asked Neuros about is “The Wahls Protocol” but the Drs say it can’t be clinically duplicated but she says she just needs more money to do it herself and do it right. Her story has also changed from “I’ve cured my MS” to more like “It is helping my MS”. There is also an “O” diet? and other approaches. What has made the most sense to me is the most recent Dr Boster advice…just to eat clean. Nothing from a box, nothing pre-prepared, nothing with chemicals or words you can’t pronounce…he says “real food” but doesn’t mean the diet with that trade name…when I asked him he said he didn’t realize it had already been branded ;-0 https://www.youtube.com/watch?v=3M5pSb9SRJU&t=46s

You have to find what works for you. What makes you feel and do better. It likely won’t just be one thing 😉 and then share.


vixen
6 days ago

That’s absolutely right @amyx, you have to find what works for you, as @itsmewithms says. In terms of diet, exercise, lifestyle choices. Some members have trodden the HSCT route, and as we know, it’s a very tough procedure. My limited knowledge is that there is just no long-term sufficient data to suggest whether or not this is successful. The 30-50% you quote isn’t a success rate, that’s the impact it can have on slowing things down. And given that 40 years ago there was zero chance, then it’s something that we generally grab. Although some people do go down the more naturalistic routes. I’m on Tecfidera; I’ve had no new lesions for 3.5 years, so I’ll take that. I followed a diet which helped me lose weight and retain energy – keto – but that doesn’t work for everyone. Take the time to explore these topics, but make sure you use authentic websites; this one, MS Society/Trust. I hope you enjoy feeling a part of things…..x


ralee
6 days ago

Just watched this, whether or not it’s substantiated I’ve no idea.


bernadette
6 days ago

@amyx personally I recommend the OMS diet which is mentioned in the piece @ralee posted above.
It took me months to come across the OMS website, which was refreshing after only finding doom and gloom online after my diagnosis. Apart from the diet there is a lot more to it. As I was already a meditator (only a few months previously) I have found that part of the lifestyle programme suited me well. It has allowed me to meet some fellow OMS followers, none of us are cultish about is in any way 😉
I have looked into some of the other better known MS diets and do not believe I would be able to follow them. Yuck, no point in being miserable.
@stumbler mentioned Caroline Wyatt from the BBC who had HSCT and she has written and talked of her experiences factually and openly.
For more of a celebrity experience, the American actor Selma Blair also had it although I would say that the reporting around her is more sensationalist, and not necessarily helpful.
Good luck


watsoncraig
6 days ago

Hi 👋
There is a series on YouTube called “HSCT for MS” that follows somebody going through it that I found really good, it does appear to be really useful (for RRMS) or you have a stack of cash to burn.
Diets sound great but when you love your grub and all kinds (except liver and whale) they can be difficult (try living in Scotland and eating helthily).
As mentioned by others “find what works for you”, we are all different, I need a filter as just cause I think it doesn’t mean I should say it!


amyx
4 days ago

Thankyou for all your responses 🙂 I think its probably right that no one thing is right for everyone or every case of MS.
I had my first appointment with the MS specialist today and he seemed to think stem cell therapy is the way forward if you have the means, and that they are starting to do HSCT at another centre in the UK now. He also suggested it might be reasonable to expect the NHS to adopt this as a treatment within the foreseeable future. I believe abroad the cost ranges from £22k-40k, though i’m sure privately in the UK it would be considerably more.
As for diet, i’m sure it’s not the whole picture, but I just want to feel i’ve done everything within my control. Reading/ watching things from Matt Embry, Prof. Jelinek, Dr Terry Wahls and Judy Graham gives me hope, even if they aren’t typical of an MS diagnosis, or they aren’t telling the whole truth!

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