Treating GBS in Middletown, NY (USA) – Just diagnosed

    • MattN
      July 23, 2014 at 8:00 pm

      Hi. My sister, early 40’s was just diagnosed with GBS. She is at Orange County Regional Medical Center in Middletown, NY. (http://www.ormc.org/hospital_services/neurology.aspx). Is this a good facility? If not, why? Where should I see about having her transferred to, if there is a strong recommendation to have her transferred? The Dr. said he will treat for 4 days and assess. She has felt tired for months. It has been bad the last 3 weeks. She is not on a vent.

      She is a single parent and could use help with kids too, I think.

      Also, where are the best places to post about this on this forum, and good tags to use?

      Thank you in advance for whatever help you can provide.

      Matt

    • GH
      July 24, 2014 at 2:04 am

      Is the doctor a neurologist? If he is, I would not assume at the outset that you need to change. See how it goes. There is nothing unusual about needing to assess after some period of treatment. My neurologist was assessing and keeping an open mind for a few weeks before settling on the diagnosis. One thing he must do is consider whether it should be classifies as CIDP instead of GBS. There are many other classifications of peripheral neuropathy as well. A neurologist is definitely needed to distinguish among them.

      You might want to get the Parry and Steinberg book for yourself and your sister to better understand the disorder and how it is diagnosed and treated.

    • MattN
      July 24, 2014 at 3:25 pm

      Thank you GH. Her Dr. is a neurologist who said he treats about 2 dozen cases a year.

      I will look for the book you refer to.

      Can you or anyone on the list point me to resources that discuss the likelihood or commonality of progression, that the symptoms or effects might get worse before they get better? (E.g., she can walk now and is not paralyzed and does not need assisted breathing. Might the disease progress during treatment and she might end up with paralysis, and needing assisted breathing?)

      Thank you,
      Matt

    • GH
      July 25, 2014 at 2:01 am

      Here is where you can get the book:

      http://t.alibris.com/booksearch?browse=0&keyword=Parry+and+Steinberg&mtype=B&hs.x=0&hs.y=0&hs=Submit

    • GH
      July 25, 2014 at 3:19 am

      Matt, as for the progression of the disease, it depends. GBS progresses to its maximum in eight weeks or less, then strength should return (although not necessarily to 100%). That she can walk and is breathing without assistance means that if it is GBS, it is not a severe case, so recovery should be good. On the other hand, the fact that she has had symptoms for a few months suggests that it could be CIDP, for which there is a great deal of variation in presentation. For that matter, it could be something different. Only a neurologist can make the diagnosis.

      Did she have the spinal fluid test? A positive result supports a diagnosis of either GBS or CIDP.

    • MattN
      July 25, 2014 at 4:45 am

      Thank you GH. She did have a spinal. As far as I know results were for GBS. I do not know if they tested for CIDP too. Sounds like there are significant variations in effects, lengths of time, recurrence, etc., in what the affected person may experience for either, and MFS. Apparently there may be 2 neurologists on her case.

      Thanks again for the feedback, and the link to the book.

      Matt

    • GH
      July 25, 2014 at 5:54 pm

      Matt, GBS and CIDP give the same result on the spinal fluid test. Differentiating the two is done by other means. Usually the presentation clearly points to one or the other, but sometimes it can be unclear.