It took me well over a year to get

October 29, 2007 at 12:45 pm

a CIDP diagnosis, the internist in the ER found ‘neuropathy’ on the internet and that became the diagnosis for the ‘first’ neuro. After of 9 months of progression I went for a second opinion and a third with a whole bunch of tests that gave me the ‘keys’ so to speak to IVIG. It was the nerve conduction studies, extensive blood tests, and spinal fluid analysis that ‘clinched the deal’ so to speak. I will suppose that I missed the GBS diagnosis as no swallowing or breathing issues occurred then or to date. Having met many who have those issues, I am truly glad I missed that part.

As for progression? Weakness and numbness went from toes and hands to legs and arms in a little over three weeks and ER admission. Progression up to torso in the following six months. IVIG has slowed the progression to a snail’s pace for which I am grateful! I have been on the IVIG 3-1/2 years.
The fastest progression occurred while waiting in the ER. Over an 18 hour period the progression went in the legs from below the ankle bone to the knee joint. The hands/arms from the fingertips to elbow. I am lucky that I found neurologists who are actually famililar with GBS and CIDP. I do not want to ever imagine alternative prosects if I had not been properly diagnosed.

I truly feel that IF I had been diagnosed properly sooner, and either received IVIG or plasmapheresis in a more timely manner that there would be less total and residual damages. Make the best of it all, ask for as much physical therapy as your insurance allows and work hard at it. I hope this helps.