Cleavland Clinic or John Hopkins?

    • MarvinHawkins
      June 6, 2017 at 10:02 pm

      Hello All,

      I visited Mayo clinic back in September. They could not 1oo% conclude that my symptoms were cidp. I also had a chiari malformation with a large syrinx. They said that the damage on the left side was due to this. They said the right side was due to cidp? This was after a week. They wanted me to repeat a spinal tap, even though I just had one a month before. They we’rent sure. My doctors back here in Chicago weren’t very impressed with that diagnosis. Long story short Mayo was a bust. I was recommended to visit the Cleveland Clinic or Jon Hopkins. Has anyone had any luck with either of these clinics? Alternatively, can you recommend someone at Mayo?

    • jk
      June 6, 2017 at 10:21 pm

      Mayo has Clinics in Jacksonville, Fl, Arizona and Minn. Please be a little more specific.

      CIDP is difficult to diagnose. Spinal tap can be inconclusive. Mine were. Throw other complications in, such as you have, and the degree of difficulty goes up, way up.

      I saw the following Doctors at Cleveland Clinic: Kerry Levin, Kamal Chemali; Debabrata Gosh.

      I saw these Doctors, and more, at Mayo Clinic Rochester, Minnesota: PJB Dyck, Tracy, Lieuluck.

      Mayo Clinic gave me a diagnosis but it took time. Cleveland Clinic did not give a diagnosis and, did not agree with the diagnosis Mayo gave me, given the same data to review.

      Pick a place you are comfortable with. I’ve heard good things about Hopkins.

    • MarvinHawkins
      June 7, 2017 at 9:58 pm

      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.

    • B
      June 8, 2017 at 1:28 am

      Marvin,
      There are some very informed and helpful people on this forum and this is a great place to get well-researched evidence-based answers. If you’re looking for a broad range of opinions on physicians, you may want to try one of the Facebook groups. The closed one called “CIDP” has over 4000 users and sometimes 50 people respond to a post within a few hours.

    • MarvinHawkins
      June 8, 2017 at 7:38 am

      I’m not looking for general information. I want to know if the two clinics I mentioned have doctors specialize in cidp.

    • B
      June 9, 2017 at 10:42 pm

      Marvin, If you ask the CIDP group about those physicians, chances are some of their actual patients might respond.