April 18, 2010 at 10:47 am
Something very interesting, when we went to the neuro, our reflexes were all present. Surprisingly, they were all normal except a little sluggih at the knee, a 4 out of 5. You woul think the ankles would be worse being that when this started it was worse with the feet first. Additionally, our reflexes were not present at all anywhere last time we were in a relapse. On last weeks ncv, the numbers were off everywhere but the reflexes were ok with the exception of the knee. It just goes to show you things change and are different not only in each other, but even from relapse to relapse. I did think of one encouraging thing, our last relapse 2 years ago when we were still in limbo regarding is it cidp or gbs, was MUCH more pronounced. There was a 4-5 month span with no ivig and the weakness was much more significant than this time. True, we have been getting ivig the entire time this year, but the amount is bareloy significant, 30 grams a month. Maybe we can try to wean again in another year or two? I just hope insurance companies do not start changing things up and rationing treatments in preparation for when the new healthcare “plan” is going to start. They are going to have to make up their losses somehow and it will probably be with people who are not in public option plans. Well, that is another battle, I can only worry about the one I am facing today.
AnonymousApril 18, 2010 at 4:33 pm
After almost a year of IVIG my reflexex are back, can’t believe it,
but I feel like that’s all the improvement. Insurance co. has denied
me any more treatments. Haven’t had one since Feb. 2, things have
gotten worse, am waiting for results from test I had. I know how you
feel sometimes I feel Like I’m at the mercy of the Ins. Co.
Alot has been going on but I’m waiting for results before I say anything. Anyway, I really just wanted to send positive prayers your way for you and your family, I always follow whats going on with you
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