Journals

I just finished writing a reply but pushed the wrong button on my keyboard and erased the whole thing. 😀 Please excuse me if it shows up somewhere but here it goes again.

Deb, I had my fillings replaced about six years ago and I saw that post you are referring to as well.

When asking about spontaneous remission I guess what I mean is remission without doing anything like ivig or plasma or prednisone. Are these the only way to heal CIDP? Mind you I am still walking and don’t want to wait until I can’t anymore but these treatments seem so intense. (As are the symptoms)

I was working on my journal this evening. Thanks for your post. I will definitely continue it after a year (I’ve had these symptoms for 10 months now which are slow and insidious).

Flossie, my neuro candidly told be that he didn’t have the expertise in CIDP,(which I appreciated) I believe he deals more with Alzheimer’s patients. He referred me to a neuro who according to Billt (from the CIDP forum) is a top specialist in Orange County where I live and thus the waiting list to get in.
My neuro did mention a spinal tap but wants the new neuro to deal with it. I didn’t think that it was always necessary for diagnosis. Is that true?

You said our symptoms are similiar. If you don’t mind my asking are you still walking? It seems like many members had acute episodes and were admitted to the hospital. At what point in your illness did you start the meds? How long before seeing your neuro did you have symptoms? I am concerned about waiting too long for treatment but for now everything is “stable”.
I’ve also heard some nasty things about the side effects of Prednisone. Are you ever going off of it? I understand one has to wean off of it slowly because of possible depression as well (Oh joy).

Congratulations on your health update. Keep it up!

Thanks all for your posts
Take care,
Taryn