Till I was in this wheelchair, I would have accepted that, OK, maybe it's my fault. Maybe I just never got serious enough with my diet. There was a stretch back around 97-99 where I was OK, and thought I had everything under control with diet.
I also thought I would have it licked with LDN. Since then, I have gone into a stretch of time when I was deemed SPMS, and not treatable, except if I happen to find a miracle in a study. With no DMDs I have gone from the occasional cane user to the permanent wheelchair user in one long slow slide.
It is irksome to hear about how some folks feel they have it licked, and don't need any help. Or that they think if someone would just live right, they would be able to control it.
I periodically meet with a room full of fairly geriatric and disabled MSers, and we occasionally lose one. We'll have to get some more soon... I am sorry, Jimmy, but I take no blame for what has happened to me. There have been times (not real recent, but memorable) when I have said all the same stuff as I hear here, about how if people with 'MS' just did this or that, they'd be as good as I am.
On special occasions I bring a platter of marijuana brownies, and you should see those little old ladies move. They bring them home with them. Never any leftovers.
But unfortunately, everyone grows older. With that, for me, has come progression. Including lots of falls, which happened because I was over-confident, trying to use legs that didn't wanna, and didn't know the rule about never letting your head tilt too far. Including a walker, AFO, and finally a wheelchair, which is much faster than legs, on flat ground.
I don't want to rain on any parades. I saw a testimony from one of Dr. Dake's people who had remission of a fair amount of disability and now does long walks and climbs, and considers himself cured. I am not expecting that, but one can always hope.
Since the heart attack, I have taken as good care of eating, exercise, and bodily concerns as most. I realize that the prevalent lifestyles are unhealthy. I have been through Paleo, Best Bet, Swank, Penthouse (no, skip that one) etc. I increased my D consumption as per Dr. Embry, whom I have seen in a personal talk he gave at Ottawa Hospital. I have been rigorous about cholesterol. The list of things I have not tried is probably still long, but I have tried a lot over the years.
As long as you have something that works for you, great. That will not necessarily help me, though it might, a bit. But never close to enough to make my left foot move. This procedure likely won't either. But, with all respect I'll take that over changes to my diet (again).
I will be ballooned. I may not improve. But I'll have tried. The long slow slide is something I have learned to live with. Once it starts, which it obviously has not yet for you, and I hope it does not, it doesn't stop, until you kick the bucket. My wheelchair is faster than yours.
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). My BNAC tests show that my brain has a HUGE amount of iron and that I have CCSVI. What did I do to cause that ? I grew up in a town where the tap water caused everything to rust it was so full of iron... is that it ? We could guess from now until forever what we, the patients, have done wrong to cause our problems. But this isn't our fault. The last neurologist I saw, and I kid you not, she is a top-notch professor of neurology at the local medical school, told me my headaches have a psychiatric origin. Now how many times have I heard that in my life from doctors, male and female. If you have symptoms they can't treat they must be all in your head. Shame on you. Well of course they are in your head, where else would they be ? (maybe in your spine?). It's time someone untangled this MeSs and I hope that CCSVI is the first lead. It is about time.
