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.
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!
January 21, 2020 at 9:34 am
Most centers of excellence have renown specialists:
I think Dr Richard Lewis is one of the best. He is at a center of excellence in Los Angeles:
The global advisory board contains a list of some of the best Dr’s specializing in GBS/CIDP and its variants:
Hopefully you will be able to find a good doctor nearest you.
July 12, 2021 at 10:13 pm
Dr. Norman Latov, NYC
July 17, 2021 at 10:44 pm
I am also Dr. Latov’s patient and so far, so good. Just started ig/iv and I’m keeping my fingers crossed that I can put this beast into remission.
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