Loobie wrote:
This is the first thread where this is being bantered about logically. From an SP, first hand account it is 100% apparent that even if my MS is 100% no longer active, that I will always have a certain basket full of physical deficits.
Think of a spinal cord injury. Let's use Superman since he's a case everyone's familiar with. It's not like he fell of a horse every day. The injury causing event (in our case MS) is not active, but the damage is there. That is why he was so adamant concerning stem cell research. Until I can grow some new nerves (fingers crossed), I'll not be able to empty my bladder even though I may not be getting worse.
I think the hysteria (I cringe to call it that since I was right there, let's call it enthusiastic hope!) arose when the first few FULLY IN THE CAMP OF INFLAMMATORY RRMS had their procedure, the inflammation calmed down. And since the outward expression of their symptoms was CAUSED by said inflammation, then those symptoms abated. I did, indeed, have things that got better. To me those were the parts of my disease that still had an inflammatory element. Those symptoms that haven't gotten better were obviously caused by damage that will need a 'repair man' to fix. CCSVI does nothing ACTIVE. It is an event.
Now we all should note that my general sense of stability and solidness are night and day to when I felt my disease was actively working on me. Just the lack of confusion and head swooning and needing to constantly shut my eyes. Well that has given me so much life back becuase I can stay engaged in what I'm doing. That's so huge I can't even describe it. I couldn't stay engaged with a problem long enough to solve it, a conversation long enough to finish it, and so on.
So I fully think CCSVI is something we should all have looked at and if there fixed. It's been miraculous in terms of QOL improvement, but I don't feel 'cured' at all. Bob's pointing out that there are many different perceptions of what cure means is very valid. To many, cure means you 'go back to normal'. If that's your definition, you'll be left wanting if you want to say this is a cure. If you want to say "I haven't felt this good in forever and I actually look forward to tomorrow and actually think about the future", then you better find someplace to get this done. I say that only because that's what it's done for me. I'm happy as a pig in shit to have had this done because, to me, it's the best choice we have in terms of impact on QOL, and isn't that what a cure would be about also? So yes, this is a conundrum defining what IS considered a cure.
THIS IS EXACTLY WHY I AM HAPPY NOT EVERYONE BEHAVES LIKE ME!
Thank you VERY much. I dont think i have ever read something better in here. Respect.
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