October 21, 2010 at 3:09 pm

Welcome to Florida. I am about two to three hour drive away. I have heard that Dr. Clifton Gooch at the University of Southern Florida in Tampa is very good and is familiar with CIDP. Put University of Southern Florida in a google search and then try a staff physician search.


November 10, 2009 at 6:07 am

Have you ever seen Dr. Leo Germin? He was reccomended to me and he has locations in Vegas and Henderson? I do know that he requires that you have a referal from a family doctor. I saw Dr. Ginsburg years ago for a different matter. He was very nice but I don’t know anything about his expertise in muscular disorders, he is local it might be worth a shot. You should probably see Ken’s doctor too and then decide which one you are most comfortable with. I know this is frustrating…………Good Luck


October 17, 2009 at 9:49 am

My doctors do not seem to know a lot about GBS either. It is hard to be patient with them. They should be the experts and give us advise but it seems we find out more on our own.

I have restless legs sometimes, but I think the more exercise I do the less frequent my legs move and jump.



October 11, 2009 at 8:31 pm

[FONT=”Comic Sans MS”][SIZE=”4″]It is encouraging to hear that a doctor is prescribing healthy ways to deal with stress instead of instantly prescriping medication. My first neurologist wanted me to take anti anxiety medication because he said I was over anxious about this disease, he also said I spent too much time on the internet doing research, and suggested that I take a vacation. I found myself speechless and in shock. Needless to say, I haven’t been back to him and I found a new neurologist. While I do believe, medication is with out a doubt, necessary in many cases, there are some doctors that are pill pushers. As [U]many[/U] people have said before me, it is truly difficult to find a REALLY good doctor. I have only been diagnosed since June 2009, so I don’t know if I have found the best neurologist in my area (Henderson, Nevada) but I do know that I will continue the search if I haven’t. I hope you have great success in finding a great doctor (don’t forget to look under the rocks).:o [/SIZE][/FONT]


July 25, 2009 at 10:50 am

Hi Tara,
You just made my day. I feel so good that my recommendation for a doctor worked out for you. Here are some flowers for you, hope they will post.



August 15, 2008 at 10:54 pm

I Like when you go into the doctors office and wait like for an hour and when the doctor enters the room He sais, “What can I do for Ya today?” Like he is selling me a TV or something.

I went to an ear, nose and throat guy because they saw Mantoiditis of the inner ear of my brain mri. I went to the ENT, and then he wanted a ct scan which confirmed the Manstoiditis, so when I go back the second time to go over the CT result. The Doctors never even once looked in my ears, nose or throat. So Why do they call them that then. He said nothing was wrong and sent me off. Charged like $500 for visit which was by the PA

Your right though, with as many doctors as some of us have had, And I’ve had a lot, you get to trying to peg just how the visit will go. Choose your words carefully because you don’t know how much time you’ll get.

Just spend the last two days in the hospital with mom who has a Huge Lymphoma in neck that just blew right up. The first hospital would not touch her. After waiting at that hospital for 6 hours and never admitted, we got her to different hospital by 3AM. the People at the Bum Hospital where talking and laughing with each other on personal issues and havn’t attended to my mother who is literally choking to death because the Huge Lymph is pressing into her windpipe and slowly killing her.

I’ll tell Ya.
Some places operate very nicely and others are scary.


April 4, 2007 at 11:07 am

HI Ann,
I meant to say contact the foundation, not the forum. Sorry, Dawn


April 4, 2007 at 11:03 am

Hi Ann,
Contact someone at the forum. There is this lady named Irene that I think is a liason. I have spoken to her and she was very helpful,I believe she is from
New York and reccommends a Doctor Latov. My ten year old son has cidp, the unpredictability of this curse as you called it is the hardest part. You do get better, but it is SLOW! Good luck to your family. Dawn


March 5, 2007 at 10:13 pm

Dear Shawn,
I also sent you an e-mail but I did look up that Dr. That my sons’ two neuro. spoke so highly of. Dr. Saperstein 602-258-3354 Pheonix Arizona at the Pheonix Neurological Association. They have a great web site. When I type in guillain barre syndrome/cidp, they were the first line on the page. I think that the Dr. Latov is in New York, call the # to this web site and I am sure they will have info. Hope this helps. Dawn