Reply To: Anyone: UC Irvine Neuromuscular Center?
I had some one come in to tell me that Physical Therapy will,start again for me tomorrow. But I am having a hard time getting them to understand that I have poor stamina, and getting out of bed and into a wheelchair is exhausting, but sitting at the edge of the bed doing leg exercises is a good use of the short amount of time we have. So far, I haven’t gotten anyone to read the PT guidelines for CIDP.
It is so hard dealing with multiple issues that come under the specialties of several doctors. I have Blue Shield PPO that is paid for by my former employer until I get Medicare. Then I have to battle with the nursing home. An infusion service wanted to come to the home to give me IVig, and they wouldn’t allow it, and they wouldn’t let their nurses do it, so I wound up having to go into the hospital for the infusion. I don’t think they are going to allow that for any more rounds. The infusion center doesn’t want me because I can’t walk. It is a real Catch-22.