To me, this (in relation to my specific case of RRMS), and more specifically in regards to the heat exhaustion, cog fog and the like, has been about inflow outflow. Fix that, you fix the above, whether I still have this disease known as MS remains to be seen, and likely won't be resolved for many years (once again, just speaking for myself). While the lack of further lesion activity, and definitely not any relapses, this far out would tend to push one towards the "trending positive" end of the spectrum, in the end, there's just no saying either way.
All I am left with is a set of self-reported unscientific anectdotal answers to questions, namely:
1. Is my quality of life better, or worse than before the procedure:
Immensely better. Light years.
2. Has the quality been consistently better on a day to day basis, versus the normal ups and downs and wild swings which are part of the normal RRMS experience?
Without question, in fact it is so reliable, that planning for events and trips and gatherings, whatever they may be, are no longer a cause of consternation whatsoever. (I hope that's not a bad day etc etc). Long range plans are important, vastly important. I went from wondering how in the world I would ever be able to work in my trade again, to actively pursuing and engaging it with gusto.
3. Does heat still bother me, even a little bit, is there an upper limit, does cooling off relieve any negative impact due to heat?
4. Hows that brainpower doing? What about short term memory, long term memory, memory in general?
Absolutely, 100% beyond a shadow of a doubt, stellar, on a daily basis, I stopped writing directions on paper, even phone numbers sometimes, instant recall is just that, instant. Versus pre-op, when I was constantly stopping people and saying, "would you wait until I got a paper and pencil, or I won't remember a thing you said". This is beyond just remembering appointments or whatever, that can be mitigated, it impacts every facet of one's life, continually, unfortunately it can leave a lot of stuff bouncing around all at once. My recent classroom experience was a good real life "out of the comfort zone" test. Instead of just making it and trying to survive, I was called on to work out complex problems on the board in front of the class to demonstrate that the curriculum had in fact been learned, and did it all from memory, succinctly, with confidence. Then I sat down and wondered who in the heck that was up at the board lol.
The first hour and the last hour of the day are no better/worse than each other, so consistency reigns supreme, and that is a good thing, very good, the best.
All that aside, I'm not surprised in the least that the above transpired in the absence of any DMD's, if the above as part of the complex of MS is strictly an ingress/egress issue, then the DMD's, as they may relate specifically to progression, would have no effect on the above anyways, the symptoms would remain, and worsen steadily, or at a minimum, remain as bad. Should it be discovered in the distant future, that progression indeed is verifiably NOT an issue either, as it relates to nerve/myelin damage or otherwise, then MS, as it exists in my particular world, will be a long gone bad dream.
Unfortunately, this only relates to my particular instance and nobody elses, it proves nothing except that I'm on a really nice long joyride. None of the above can be measured, or scientifically quantified, I know that, and KNEW that before ever setting foot in Stanford. The first group will eventually end up a footnote in the medical books, if that, this was understood also before embarking, and that's okay, really okay.
I went up for myself, my kids, my family, and my quality of life, hoping for improvements. All else is gravy.
I do think though, that my particular flavor of MS, inflow/outflow as I see it, is only part of the MS picture, and fixing that in however it presents in all MS patients is not going to solve the MS puzzle, but it's surely going to make a dent in a lot of people's lives. For now, amoi will take what he can get and be thankful for it, whether I can explain it in molecules and big words or not...
Apologies for the narrative.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko
, Virtually symptom free since, no relap