Any GBS Specialists?

    • Anonymous
      October 5, 2006 at 4:32 pm

      Does any one know of any GBS specialists in the country?

      My brother in law was diagnosed yesterday with GBS and he is not doing well. Fortunately, his lungs have not been affected, and he was started on IgG tioday. They are looking into plasmapharesis.

      My family would like to explore any and all options at this point. Thanks for your help.

    • Anonymous
      October 5, 2006 at 7:31 pm

      first of all sorry to hear about your brother. IF you let us know where you are there are many people here with good doctors. and maybe we can help you find one near you!

    • Anonymous
      October 5, 2006 at 8:00 pm

      hi jhitt & welcome,

      yes, where RU? if the ivig stops further decline it is working. it does not make you better. plasma should not be given till the ivig has been given a chance – many reasons for that.

      take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 5, 2006 at 8:49 pm

      Hello Jhitt,

      Welcome to the forum, I hope some of the members here will help you through this terrible ordeal. I do echo Gene’s post about IVIg and Plasmapharesis. If they started IVIg today, are they still considering plasmapharesis? An immediate change is not necessarily seen because the IVIg or the plasmapharesis is there to try and stop further attack on the nerves, it does not ‘cure’ GBS as such. Only once it is determined that IVIg has done nothing, should plasmapharesis be considered because this could ‘flush’ out the ivig, and all the benefit it is providing.

      Where is your brother-in-law? Gene has some specialists around the country who have dealt with GBS before.

    • Anonymous
      October 5, 2006 at 9:04 pm

      My brother in law is in Manchester, New Hampshire. I think we are willing to take him about anywhere if this goes on long enough. Any names of physicians would be greatly appreciated.

      Thanks for your support.

    • Anonymous
      October 5, 2006 at 9:08 pm

      I sent you a private message with some liaison numbers.

    • October 5, 2006 at 10:40 pm

      Well you get a lot of opinions here…all I know is I had both over a period of about 10 days. The first IVIG within about three hours of being diagnosed.
      The idea is to stop the prgression of your antibodies attacking your nerves.
      After nine weeks I was able to be discharged to home with a walker and out patient therapy. Within a month after, I was able to work part time, and in three months work full time, driving and having a pretty normal life.
      Try Mayo Clinic web for more information – they may have doctors who specialize. My doctor at Northwest Community Hospital, Arlington Heights, Il seemed to be quite knowledgable, and based on my recovery I guess she was.

    • Anonymous
      October 6, 2006 at 8:44 am

      jhitt, ny is the closest i have. take care. be well.

      NY manhattan – Dr. Norman Latov, New York Presbyterian Hospital. He is very difficult to get appt. with though. I was also impressed by Dr. Dale Lange, very highly qualified Mount Sinai Medical Center. I have seen Dr. Latov’s partner, Dr. Russell Chin. He has been excellent in diagnosing my CIDP quickly, getting treatment started and being available for questions by email (I live over 200 miles away from his office). Dr. Latov and Dr. Chin are in the Peripheral Neuropathy Center, which is affiliated with Weill-Cornell Medical College and N.Y. Presbyterian Hospital. They are leaders in the field of CIDP research. Each time I have gone there, I have seen others receiving IVIg. They also have a very kind and professional staff, which counts for a lot these days. Here is their website: [url]…eral+Neuropathy[/url]

      Dr Weinberg in Manhattan. he is with NYU. He’s great. I’ve been using him for 8 years now. He’s at 650 1st Ave.

      Weill-Cornell Peripheral Neuropathy Center in New York City. My doctor is Howard Sander MD, but I also know Dr. Chin, Dr. Latov, and Dr. Brannagan– EVERYONE there is top-notch! [url][/url]

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 7, 2006 at 9:29 pm

      You want to see DR Allan Roper at St Elizabeths in Brighton, Massachusetts.
      ( a suburb of Boston) The hospital is located off of the Massachusetts Turnpike Exit 17.. He is neurologist with specialties in GBS
      Best of Luck
      Amy Maki