Almost ready to throw in the towel

I've been struggling with CIDP for 35 years. Five solid years of steroids, then the IVIG which gave me meningitis on the first go. The last five years I've been hospitalized for 63 days for IVIG infusions and really don't see any difference. I've also been on prednisone again - oh, yes, I loved those extra 40 pounds. Then there was the Imuran, followed by Cellcept, and then the Plaquenil - which, despite what the eye doctor said, caused a film to grow over my eye. I finally took myself off everything about a year and a half ago. Things were stable, even though my drop feet were worse and I have to wear foot/ankle braces to walk.

Now the latest: About six weeks ago I started to feel the fatigue again and the loss of balance. A chill was constantly running up my right side. I'd break out in hot flashes at the slightest exertion. I lost my appetite and had upper chest pains. The doctors ran every test imaginable for heart, lung, digestive track - all normal. So it's the dang CIDP again. I refused the 100mg of daily prednisone, but agreed to go in for 3 days of IVIG. Here I am 10 days later feeling not a bit better. My options are just about exhausted. I don't want PE, I don't want steroids. I'm thinkin' I'm done and whatever happens happens. Better than being tortured for the rest of my life with these treatments.

Whine, whine, whine. A lot of you have it much worse than I do, but I'm so fatigued with it all, and so frustrated...

You poor thing sounds like you are entitled to have a bit of a moan. 35 years with a continuous health problem is a long time especially if the treatments that are meant to help don’t. Hang in there.

I'm in a better mood today. Thanks for listening. Seeing the neuro tomorrow and will probably agree to go on prednisone - at least for a specified time frame and maybe on alternate days to minimize the side effects. Just feeling a bit beaten down and disappointed, but I guess each one of us feels that way from time to time....

I reckon some self pity can be a good thing the trick is knowing when to pick yourself up dust yourself off and start over. Good luck with the neurologist I hope things become easier for you.