Last reply 8 years ago
DMDs vs No DMDs

Has anyone been on DMDs and then decided to come off them permanently? Having trouble deciding whether enduring the side effects now is worth it to reduce possible relapses later on…

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Anonymous
8 years ago

hey i felt just like you 3 different dmds later i decided i couldnt bear the side affects anymore but bout 6 monthes off dmds i had a massive relapse but not sure whether i was just gonna av a massive relapse or it was because a came off the dmds that i wont never no, iam gonna start the new pills by xmas when availanle on nhs thinking now it prob was best to av sumtime u never no wot the future holds xx


daisy
8 years ago

Hey Abby, am so sorry to hear that you had such a bad relapse after coming off the DMDs, it is such a difficult decision to make, and as you say you can never be sure that the DMDs would have prevented something because it might have just happened anyway. Really hope the tablets help you when you get them xx


djdsouza
8 years ago

Have never been on any DMDs. Have had 4 or 5 relapses and now use a wheelchair, but I feel great and feel positive. Since I started taking some supplements that an Osteopath recommended to me based on research in the Lancet medical journal and cutting out certain foods, I’ve never felt better.


Anonymous
8 years ago

I decided not to start on DMDs (at least for the time being) when my neurologists suggested them as I didn’t want to encounter the side-effects. For the time being I don’t see how they could make a positive day to day quality of life improvement.

Before making this decision I did a lot of research. I did find a book that could help you to understand the medicines and the recent research: Overcoming Multiple Sclerosis:An Evidence Based Guide to Recovery by Prof G Jelinek. While he does advocated changing your diet in favour of very low saturated fats, he does also discuss all of the medicines in details (benefits and negatives) and provides study references. He also has been on copaxone, so he’s not against medicines at all just about doing the best to stay healthy. I hope this helps. There is a website by the same name too, Google it!


daisy
8 years ago

Thanks serabee, I have been looking at the website, very interesting stuff indeed. I have for some time now been trying to find a copy of a book called MS: Control of the Disease by W Ritchie Russel, which I understand is about MS and exercise but alas it is almost impossible to find. It seems Prof Jelinek is a little easier to track down! Thank you xx

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