I guess I have spent too long in the CCSVI forum without checking back here. Please keep that in mind, while I theorize?
And please don't think I necessarily have a lot in common with, or that I think I am worse off than, anybody else.
I might put every "MS" symptom I can think of down to not being able to walk more than half a block, without: 1) wearing myself out -- muscle fatigue 2) getting overheated. This sedentary lifestyle is tolerable as long as I am sitting down, but very bad for my health. It seems I cannot use the largest muscles in my body for very long. I have been that way, slowly increasingly, since before my diagnosis.
I was diagnosed RR"MS". My diagnosis took place about 15 years after
my first "incident", back in 1982. Dx was in 1997, when I had 5 more years of working life, 7-9 more years before it magically changed to SP"MS". By 10 years, I was using a walker full time, but unable to walk more than a block very well, and they took away my driver's license within another year. Since 2005 or so I could not get DMDs. a) I can't get rid of heat and b) I get massive muscle fatigue in my legs and back.
It isn't long, I think, after not walking a while, before big disabilities begin.
I think I might say everything else is secondary to not being able to be upright, and not seated, without getting too tired. I might say that that
is secondary to getting overheated more and more through the years. Even that
could be secondary to not having good enough veins to distribute, and lose, heat, more and more over the 16 years since they shared my dx with me.
It is not enough to say I have to chill myself. I need to be in air, above a very similar temperature as well. That air temperature, at which I become increasingly uncomfortable, and start to fall apart, is pretty constant
. It is not measurable with a fever thermometer. I think in my case, it's temperature regulation of my brain that is the most broken. That
might be secondary to degradation of my ability to drain my brain, and possibly my spinal cord too. I think past a certain elapsed time it becomes, not irreversible, let's just say that, increasingly, the road back gets longer than the time I have available to travel it.
Three digits of accuracy (1 part in a thousand) on every fever thermometer that's existed in my lifetime. Even in electronics, that's more than you need, much of the time.
One neurologist told me I was "grasping at straws". I think I am trying to get out of a haystack.
Has anybody reported a treatment making them more temperature tolerant, and not improved their ability to use their legs/back, either better, or longer?