Hello & welcome

There are no cut and dried answers to your concerns.

By all indications CIDP is similar to the energizer bunny. It just goes on and on. But, every case is unique.

You say you waited a long time. For me it was more than 30 years between first symptoms and diagnosis. Here’s what I consider the bottom line: If it’s been so long that you get muscle loss due to axon degeneration, there generally is no recovery for those axons. And, therefore, no recovery for the affected muscles.

For those portions of your nerves that have not yet suffered axon loss it is imperative that you receive treatment immediately.

I have had remissions (got better, or, at least no worse) followed by further declines. Even prior to starting IVIG in 2008 I had spontaneous recoveries followed by declines. On at least three occasions, over the years, I could no longer hold a pen, grasp and pull a zipper, or turn a key in the lock, with either hand! Any lock- car, front door, dead bolt, you name it. But, I did recover those functions, to a limited degree in my left hand.

What can you do? Confirm your diagnosis and get treatment.

Good luck.