Reply To: Cleavland Clinic or John Hopkins?

I received my initial diagnosis of cidp from my Dr here in Chicago. Her conclusion was based on my emg and slightly elevated levels of protein in my spinal fluid. She herself thought some of the damage could have been from complications from the Chiari. She sent me to Mayo in Rochester Minnesota to get another opinion. I was there 5 days which I understand is common. During that time I saw Dr Tracy and her attending physician. I completed emgs, a nerve conduction study, and MRIs of my neck and spine. They wanted to do some type of fat aspree test and a new spinal tap, but I was out of time and needed to get back to Chicago. I never got an official DX of cidp, but they shared my Dr’s initial theory. My Doctor had sinnce talked to colleauges who debunked that theory.

My symptoms have gotten wor=rse, so I need to go back, but I’m worried they still won’t be able to pinpoint the issue.