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Hmm.... seem to have ruffled a few feathers there with my attempt at light banter with gwa. Perhaps if I can bore you with a little history of my personal experience of neurological illness, you might understand where I'm coming from.
First, my dad died when I was six months old leaving my mum to bring up three children on a pittance. When I was 14 she was diagnosed with MS, (this was around 1975, so that the diagnosis took years to confirm), and the struggle for her must have been intolerable. She married a man who also had MS, and from my observation I would guess that they both had PPMS because they both continued on a long, steady, unbroken decline. I was diagnosed with MS when I was 25 and have gone the same way so that now, with my 46th birthday tomorrow, I am virtually paralysed from the neck down with just some limited movement in my left-arm, (I'm writing this using a speech recognition software). My mum and step dad died within the last two years, and now my brother and niece have been diagnosed with Huntington's disease so I have a 50 per cent chance of going down with that, too .
Because I have no opportunities to leave my house, I tend to picture the other correspondents on this site as being in the same boat as me, that is: having been unable to move for years; being put to bed at night mentally screaming that I do not want to wake up in the morning; furious with the world when I find out that I have indeed woken up. Because I have such a preconception, it can come as a bit of a shock to me to be reading and agreeing with a post which states how terrible this disease is, and then discover that the poster is still able to work, walk, socialise and maintain at least some sort of life -- I'd happily kill to be able to do that, even in a limited way... and yes, I'd sing to the full moon if it was proven, objectively, to work.
But my real point is this: ever since mum became ill all those years ago, there has been a never-ending torrent of ideas, discoveries, breakthroughs and promising drugs which have all fallen by the wayside. But much, much worse has been the endless stream of "miracle cures" and snake-oil doctors who have found "the" answer. Well before the internet was even a glimmer in an electron's eye there were high profile reports that vegetarianism was the cure, raw food, micro nutrients, vitamin supplements, B12 injections, amino acids... the list is endless and some of the ideas are still around today. Does anyone remember the Cari Loder fiasco? It was a media frenzy because her discovery had worked wonders and completely reversed her MS. The regime consisted of tricyclic anti-depressants, B 12 injections, and Diet Coke. I was immediately suspicious because an awful lot of people with MS were taking all three substances and if it were so effective surely would have been stumbled upon long before. I strongly suspected she was experiencing euphoria because of the anti-depressants, and a coincidental remission -- the last I heard was that she had a relapse, and the story faded into obscurity, but not before many thousands of people had had their hopes raised unrealistically high and then cruelly dashed, including my mum and step dad.
I live in a country where cynicism is high and religious belief very low -- Britain -- beatms has posted on this site before and been criticised for doing so, (not by me), he has been asked not to post any more or for the administrators to block his posts, largely because he appears to have some kind of agenda and some of his posts come dangerously close to advertising or proselytising.
Cynicism is not the opposite of an open mind, instead it is an open mind with the Spam filter firmly switched to "on". I do not dismiss any well-founded ideas: indeed I have posted a couple of theories myself on how leaky gut might be implicated in MS; I find the beautifully researched posts on the involvement of insulin absolutely compelling, and the theories about intestinal worms very convincing. The alarm bells start to ring when the title of a thread keeps changing, the author has been banned from other ms forums, and the link contained in the first post takes you to different destinations, as happened with this one, (though, to be fair, that could simply have been a technical problem).
Yes, I AM tired, and depressed, and suicidal, and sceptical. In 32 years not one drug, not one diet, one regimen, one supplement has helped me or the ones I have loved. My cynicism leads me to think that those of you who have felt better by trying one thing or another, (as I have), may possibly have addressed a subsidiary issue. If you get rid of a low-grade infection, or eliminate a food to which you are intolerant, you will undoubtedly feel stronger, better, fitter and it may appear that your MS symptoms are reduced. It is a leap of faith, however, to think that you have directly affected this disease, (although of course, feeling better in any way is entirely a good thing) .
I'm going to stop now, because I think I could go on forever. If anyone has read this far, thank you very much for taking the time. I didn't mean to get anyone down or demolish anyone's hope -- in fact, you may be surprised to learn that I am entirely optimistic for those of you who are in the early, more benign stages of MS -- thanks to the amazing diligence of Bromley, Dignan, and all the other contributors, we are more fully aware than ever of all the work that is going on behind the scenes in the name of science, and on our behalf.
I shan't contribute to this site again, as I don't feel welcome. Anyway, every time I find an interesting article or piece of research, someone has usually been quicker off the mark than I am!
Love and good luck to all of you.
Dom.
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He had stopped taking this and went back to okay. Is naturally ocurring fiber, raisins, fruits, etc., okay? Or is this a problem as well.