I don't even know how to feel, I really don't
that I'm just so guarded to come forth and say anything because I just think it's going to go away. I can't ignore it anymore
My God Marie, could it be true? My emotions are still just all over the map
It's like you took the words right out of my head Lew.
Yeah; what he said.
The terror that I feel walking without the cane is alike the mental terror I feel over this: there is a BIG part of me that doesn't want to acknowledge any improvements until they seem undeniable, sustained and not possibly wishful thinking. I am afraid to believe.
This is new it is experimental. No one knows what the long term will be. No one knows for sure if the disease will truly not progress, and if it does not for some, will that be true for everyone. I tell myself this----Why? to try to protect my heart in case something we do not know or understand yet comes out to be an issue. My fragile heart is terrified, and the unknowns weigh on me. What if, what if....
But the spasms are not changeable. Progressed persons know what I am talking about. The only thing that impacted them over the years other than spasm meds was flagyl, but that was incomplete and temporary relief aligned with pulses.
The fact that they are so strongly impacted and continuing to evolve with no drugs at all means to me something is happening in my brain that is positive. I just can't convince myself or prevaricate that this is a placebo any more. The difference is too striking, and as I said the PT noticed it herself and just commented on it unprovoked.
If I take a skeptics point of view, they might wonder if PT itself is the cause of this improvement, but the answer to that is no. I get PT on a regular basis and have had my own home gym set up for a long time. I have Theraband in every color. I would not be still walking if I had not worked at it constantly after 18 years of this. The spasticity was making it harder and harder to do what I needed to do, I was not able to reduce my spasticity by getting more exercise. It is not PT that did this.
There are still unknowns about this whole surgery and things that need to be remembered, one is that if for some reason my stents which are very high develop a problem and need to come out---let's imagine a nickel allergy develops or something weird like that---then the needed surgery would be very difficult and involved I believe.
IN MY SITUATION where there were no medical options available to me other than something new and experimental like this I am glad I had the chance and I am very blessed.
I was thinking last night I ought to document the spasticity I still feel for my own reference so I can notice later if it goes: I still feel "stiff" in my weaker leg walking. On the ellipse it resists its turn to bend and feels stiff there too. My right leg only stiffens out getting out of bed in the morning for roughly 2 seconds. Occasionally, perhaps one night in 4, I feel like a flexor spasm MIGHT start up once or twice, but a change in position makes that go away too so I can rest easily. If I sit for a long time without moving say 3 hours computing, I am a little stiffer trying to walk when I stand (but I have RA too, so that is not necessarily MS). My right arm that got broken so badly never completely rehabbed (it never will) and it functions strangely and is stiff and sometimes seems spastic but I do not know what is what there. So if things continue to evolve these are spasm areas that can potentially change more.
If Dr Z's team thought they saw improvments at 18 months, well then, we'll see.
I want to thank everyone for reading my thread and encuraging me. It means a lot to me, thanks!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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