Reply To: New working diagnosis of CIDP, starting pred

July 11, 2017 at 10:36 am


I feel your frustration. I am about a month away from getting my evaluation at the University of California Irvine Neuromuscular Center. Six months is a very long time to wait when your body is battling you.

I have been fighting a major battle this week in my nursing home just trying to keep cool. They even threatened to throw me out yesterday when all I was asking was to keep my room door shut so the air conditioning stays in. There is no excuse for a room with AC to be 84F when a patient is on Prednisone and already has skin breakdown.

I had a LP in April. Not a bad experience, as it was done in Radiology which got it right, but the results were not conclusive. High protein, but normal high. I was in hospital for 5 days of IVig at the time, so it seemed like a good time to do it.

My strength is better with the Prednisone, but all of the extra weight just makes trying to walk harder. I really have not been able to walk since September 2015, and things aren’t getting better in that regard.

Hang in there.