Diagnosis time

March 14, 2009 at 6:31 am

I started experiencing muscle strength lose in September ’07. I was finally diagnosed March ’08 and started IVIg April ’08. My decline was slow but steady. At first I was told by a physical therapist (a relative) we lose muscle strength as we get older. So, I waited two months before seeing my doctor. Initially they ran blood tests and my liver counts (ALT,AST were high) so we went down that road. When everything about my liver seemed OK, I was sent to my first Neurologist. After the 1 1/2 hour, very extensive, EMG he said he was 99% sure I had Myathenia Gravis. At the time I was just relieved it was not ALS. After the labs did not confirm, he said he did not know and referred me to a second Neurologist. The second Neurologist did about a 20 minute EMG and said he thought I had CIDP. I had MRI’s and a lumbar puncture which came back at 94. I then had my first round of IVIG and made some improvement. The improvement with the IVIG became part of the diagnosis. The next two months I had a reduced amount of IVIG. I stayed stable but did not improve. We then went back to the load dose of IVIG and I have continued on that every three weeks. In the beginning I had continued to try to work. When I really made progress was when I worked part time for three months and took naps almost every day. My naps were anywhere from 2-4 hours and I had no trouble sleeping at night. I think your body really needs to heal. I am very functional now but not back to normal. I still do not have all my body strength and my balance seems to be off — not all muscles working. I tripped the other day and fell hard. I can not recover if I lose my balance. It is rainy and cold here right now and my muscles hurt. Normally I have very little pain. I too think it is how quick you stop the damage and from what I have read, six months seems to be the key.
Good luck!
Donna M