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My attacks come every 24 days,  I get weak, seen 6-7 doctors and no one wants to give any treatment! Is there any hope?

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I was kinda hoping I wouldn't have to worry about another episode and was

really looking forward to the treatment before then but I understand you are

doing all you can and I appreciate it. My episode is due for Monday. Hasn't

been too bad the last few days. Getting around with the usual difficulties

but still reasonable given the circumstances. I really dread these episodes

cause they can be quite severe at times. Hopefully they will soon be a part

of the past.


I did tell one of the dr's I seen about the tiredness and he diagnosed it as Sleep Apnea. Needless to say, we know what that is and told him he was a quack. We have a neighbor and know of a few people who do have that and it is not even close to the problems I am having. That was the Dr in JC that you made an appointment for me a while back. Cue the duck..haha.-----------------------------------------------

Well Saturday my ATTACK? started. Was pretty severe and was surprised. As of Tuesday AM I am still having problems with it. Mostly just severe weakness. I have fallen 4 times since it started. Haven't hurt myself too bad yet. Minor chest pain and trembling upon exertion. Heavy muscle pain ( more like aching and not the usual sharp pain but very heavy and very uncomfortable). Just feel like dropping on the floor and not moving for days..haha. I guess my long term swing is still in a downward trend.


I have had my 3rd day of IVIG and have regained some of my stability. Still

a little weak but gaining quickly now. Only problem is minor headaches and

chest pains but minimal.


Just wanted to let you know that I am still improving. Each day is better

then the last and I am also back to shooting basketball. I still can't hit a

hoop for beans but I figure with time my strength will improve. Still kinda

pushing or heaving the ball. The IVIG is working. Today was day 24 and still

no signs of my episode.




 Kevin had given up, he was suffering and could barley function, when the team at CIDPUSA communicated with a neurologist in a Great Central/ Eastern state to give him the medicine. You see the details in the above emails.