It’s been a frustrating few weeks, and today has been particularly bad. Never have your symptoms worsen near a holiday!!!
Backstory- diagnosed with likely GBS 4 years ago. Very mild, no treatment, minor nerve damage. Then symptoms came back. Two docs said no CIDP but had no explanation for my continuing worsening symptoms. Doc 3 diagnosed CIDP. I’ve thus been doing IVIG for 3 years plus a couple short rounds of predisone for flare ups. I’ve been pretty stable and live a normal life with numb feet. Doc 3 (at a major big city teaching hospital) left job in March. I made an appointment with another doc there. Also a professor, over 40 years experience and published papers. In the meantime, symptoms started on a trip west three weeks ago. I had my scheduled IVIG. No improvement. I had my first appointment with new doc. He does not accept the CIDP diagnosis so we’re starting again from square one, which is fine- I wanted to a fresh look. But my symptoms are now through the roof. He did not recommend prednisone, which has always seemed to help settle things down. Yesterday I was at wits end so out of desperation I took a first 20 mg dose, and planned a two week weaning off as I did with prior doc. Today (Monday) I called office. Phones were down but I finally heard back- doc is out of country and on-call doc won’t be in until next week to renew gabapebtin (which I haven’t needed for four years). They said go to the ER. I felt a little better a couple hours after the prednisone but it’s back with a vengeance. My GP referred me back to neurology.
What do you do when there’s no relief? I’m not ready for ER, I’m just in a lot of pain, the most since my first episode four years ago. Thanks so much for your support. I know so many out there are suffering so much more.