I am looking for a Neurologist that has vast experience treating GBS. I live in Central Florida and would like to find one in Florida, but I am willing to travel. While I like my current Neurologist she has very little experience with GBS and would like to get a second opinion.
Cindy, did you get your doctor? I would recommend Shands: https://ufhealth.org/
While I don't know any provider in FLA (and I don't blame you for wanting to find one in your home state) I strongly encourage you to find one that is directly associated with a University level teaching Hospital or Center of Excellence first. I am sure same does exist somewhere in FLA.
I am very aware of how difficult it is to find a qualified Neuro that has ever diagnosed or provided services to GBS patients. They are out there even though difficult to find.
As you posted more than 2 years ago and there's doesn't appear to be anything you recently added, I hope you found the expertise you were seeking.
To your good health,
I forgot to ID who my Neuro is. His office ph# is: (310) ■■■■■■■■ He is Los Angeles, CA based and only has the 1 office that he shares with another specialist I (no, don't recall his name and know nothing about the 2nd MD). .
His name is Dr Hart Cohen and he is a Cedars Sinai physician in Los Angeles. His office is attached via a walkway to Cedars Sinai Med Ctr. He was the only MD I saw that correctly diagnosed me July 2009, 4 mos After the 1st symptoms appeared and unfortunately far far too late to have received any treatment whatsoever.
Dr. Hart Cohen is simply Excellent.
Warning: He does not accept Insurance for reimbursement.
If you live in the Los Angeles area or even So Cal and are bashing your head against a wall in frustration because things are happening Right Now, consider seeing him. I know paying out of pocket is not always a preferred option but he Really Knows His Stuff. He has seen patients with GBS before. He takes his share of ER call at the Med Ctr. He's very current in the treatment options available for GBS (and they are the same today as they were in 2009- either IVIG or Plasma Exchange).
To actually be helpful treatment has to start within 7 days of the symptoms appearing (some studies say up to 14 days but Dr Cohen is not one of them) and that is a huge issue as GBS is really a challenge to diagnose. Unless an MD has ever seen or had a pt that has had GBS that he/she is currently following, most MD's miss the boat entirely which is exactly what happened to me. My situation was compounded by the sheer incompetence and disinterest of the 1st Neuro I saw and no, I won't share his name because I would never ever recommend anyone see him for anything at all.
Either way, Neuro Dr Hart Cohen is EXCELLENT. His appts run 1 hour (and why not- you are paying for it directly), he really listens to what you are saying, is personable and truly wants to help. I dearly wish I had found him when things began for me so that I could have tried being treated for what turned out to be a profound incapacitation that I had to endure on my own, alone, with no medical assistance ever provided at all when my symptoms were at the worst..