I'm 49 years old, 2 years ago this month I started having trouble climbing the stairs, squatting (couldn't get back up), then my hands and arms got weak. My GP ordered a brain MRI, thought it was MS, sent me to a neurologist, DR Downs, went through tons of tests, including nerve testing, they concluded it to be cidp. I began a 5 day ivig treatment, on the 3rd day I walked out of the hospital (at this time I was in a wheel chair because I could barely walk), it took them many months to diagnose me. That is the only treatment I've had to this point. I got to one point where I was having 1 treatment every 5 weeks. The last 2 treatments didn't seem to do what they normally did and I just kept getting weaker. 2 weeks ago she put me on 80mg per day of prednisone. I'm not getting any stronger, the medicine is making me dopey, shaky, unable to really function for about 6 hours of the day, it's extremely difficult for me to even do dishes, typing right now is very difficult also, I'm able to walk unaided but not well. Past history is graves disease as far as any autoimmune issues. I would be willing to fly to San Francisco to see Dr. Katz (how many patients has he treated, is my doctor doing what is correct?) If you can get me IVIG with a script why can't the hospitals up here get enough, any ideas? B |
