Reply To: Near the end :(

Your father doesn’t say “she’ll be fine” because he can’t know. Even the doctors don’t necessarily know. It’s better just to do the best that can be done, and accept the result.

I’m wondering since IvIg has not brought her disease under control, whether other treatments ever been tried or discussed. Have they ever considered plasma exchange? I was switched to plasma exchange when IvIg did not seem to help much. After several PE treatments, I was put on a drug regimen which has controlled my disease. Of course one patient’s experience cannot be used to predict results for another with CIDP. But if one treatment doesn’t work, it is not unusual to try something else.

Ultimately, there is the trial stem cell procedure for those for whom all regular treatments have failed. I’m not sure your mother would qualify for it, however.

My thoughts are with you. I know how difficult it is to see someone close to you in this condition.