new to gbs

July 11, 2006 at 5:23 pm

dhj travel,

Your husband needs to be treated. He must go to a university hospital. Not all neurologist know how to treat GBS or the chronic form CIDP. Which he may have. I had the same symptoms develope that your husband has last July. I have seen a total of 4 neurologist since the symptoms started. The 1st thought it was GBS but wasn’t going to treat it until I couldn’t walk at all. (I had run a 1/2 marathon in Alaska 2 weeks before the symptoms start and I had spent 2 wks. hiking around Alaska) At that time I was having a difficult time going up stairs I saw the 2nd neurologist twice she did some test and referred me to a 3rd neurologist that she felt I needed to see immediately, his expertise is in neuromuscular diseases. He diaginosed me with GBS and treated me with IVIG immediately. Approx. 35 days after treatment I developed the symptoms again and was treated again then 35 days or so after tx. I developed the same symptoms. He at that time dx. me with a chronic form of GBS which is Chronic Inflammatory Demylenating Polyradiculoneupathy. I saw a 4th neurologist at an university hospital and the dx. was the same. The treatment slightly different which I like so I stayed with him and my strength is almost normal I am back to work but I must get IVIG every 28 days and take some other medication. So at least a 2nd opion is necessary.

Good Luck to you,
Pam K