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Simvastatin Trial & ponderings

Posted: Tue Feb 26, 2019 9:07 am
by Jaded
Hi folks

I went for an assessment of suitability for the phase III trial of simvastatin today.

Having gone over my MS history, I am left feeling really unsure of anything. Does anyone really know what helps MS?

All the food I stopped eating after the diagnosis, and all the supplements I now take, and all the exercise I have been doing.... how do we know any of this works?

Of course we are all experimenting in the absence of answers. I was comparing notes with someone who was not accepted on the trial as they were deemed too well (EDSS was nil - they could walk without issue) who is overweight and has a diet with no restrictions, does no exercise. My EDSS was 4. I know my walking is difficult. I guess I feel short-changed (to put it mildly). Would I have been better off ignoring the diagnosis and just carrying on as before?

Taking a step back I guess the difference is that I was dxd 15 years ago and they were dxd two years ago. But they are happy and didn't want to change their life. Whereas my life was completely changed by the dx - my work, my status have all been affected because I allowed them to be affected. I can't blame myself, it was a huge shock as it must be for anyone who is diagnosed with a degenerative condition. This isn't hindsight. I am just left with more questions than answers.

Re: Simvastatin Trial & ponderings

Posted: Tue Feb 26, 2019 12:31 pm
by Jaded
I realise there is no real question here and if I am honest I wasn't expecting specific answers.

I came home and read other MS boards with people saying they had been given MS drugs that helped reverse disability - but that these are not available to those who are SP. I've never been offered a DMD, ever, so I do feel quite aggrieved about this.

Losing function (and identity) is not an easy thing to deal with. Maybe it is something I can get back, I don't know, but I am feeling like the NHS just sits back and watches. When I come to this website and read the various posts I feel more hopeful, that maybe there is something I can do. And this is the thought I need to take with me at the close of the day.

I don't know about the Simvastatin. It might be a good thing, or I may end up with a placebo, if I decide to go ahead.