Reply To: confused

Anonymous
April 1, 2009 at 12:28 pm

kathy,

I had a sural nerve biopsy. It was the final diagnostic tool for me. It showed demyelination and remyelination in both sensory and muscular aspects. Combined with the other test results, it gave me a final diagnosis.

In the beginning, none of my test results were way out of line. 10% above normal here and there, 15% here, 5% there. Just enough to keep looking, but no BIG RED FLAGS. Homeagain in on the right track, there is no single test for CIDP. Kind of process of elimination. I hope they are able to eliminate CIDP, I would certainly rather have something else.

I also agree that KNOWING is so much better that tests, tests, and more tests with no clarity. I went for five or six years without a diagnosis. Wondering what was happening to my body and how I could combat what I didn’t understand.

Keep after your neuro. Get your test results from him, and his office notes. read what he is saying and try to understand where he is going. Nothing beats knowledge, nothing.

Good luck

Dick S