Best GBS Doctor in USA?

    • January 13, 2020 at 9:58 am

      I am 11 years out and still having ongoing symptoms (general aches and terrible fatigue).

      I would like to know who the very *best* GBS doctor in America is so that I can go see him/her.

      I live in Denver, but I’m willing to travel anywhere, and pay for the appointment if my insurance won’t cover it.

      Who do you think is our top doc?

    • January 17, 2020 at 4:42 pm

      Hi Kay Lyn,
      You asked a great question that the GBS|CIDP Foundation tends to avoid. They don’t recommend any particular physician or group, but do list a number of good GBS Centers for Excellence across the country. Here’s a link to that list: https://www.gbs-cidp.org/support/centers-of-excellence/?fbclid=IwAR1lahwH10oA8gJlVYxtnCxPmGFJCXbfcl1s4WliknIGF-tSzB4i7_xEJqk

      I had GBS 15 years ago (when I was 46 years old, now I’m 61), and it took me 6 months to get mostly back to normal, and probably another 6 months to feel completely recovered. I still have tingling in my right hand occasionally, and that’s what brought me back to the Foundation this week. I’m in week 4 of recovery from a persistent flu virus, and my nerves are reminding me of that. I probably do not have a recurrence of GBS, but if the symptoms persist, I want to understand my options. I came looking for a good GBS neurologist in Chicago, since mine retired 5 years ago. The folks in the Foundation recommended I contact the local chapter, and would likely recommend you do the same in Denver. Perhaps you’ve already done that.

      Last, but not least, a friend of mine had GBS a few years ago and was treated at the Cleveland Clinic which did a great job for him. He also said he heard very good things about Johns Hopkins (which is the first Center of Excellence that the Foundation’s list). I hope that helps, and that you are able to get the treatment you need to fully recover.

      Eric

    • January 17, 2020 at 4:48 pm

      Rereading my friend’s note, he specifically mentioned Dr. David Cornblath at Johns Hopkins, so you might try to contact his office.

      Again, Good Luck!

      Eric

    • January 21, 2020 at 9:34 am

      Most centers of excellence have renown specialists:
      https://www.gbs-cidp.org/support/centers-of-excellence/

      I think Dr Richard Lewis is one of the best. He is at a center of excellence in Los Angeles:
      https://bio.csmc.edu/view/11089/Richard-A-Lewis.aspx

      The global advisory board contains a list of some of the best Dr’s specializing in GBS/CIDP and its variants:
      https://www.gbs-cidp.org/about/medical-advisory-board/

      Hopefully you will be able to find a good doctor nearest you.