Anyone Els Kind Of Feel

    • Anonymous
      October 16, 2009 at 10:52 pm

      Does Anyone Els Kind Of Feel Like Their Doctor kind of ignores your GBS History? After I got Out Of the Hospital, I had To Go See My Neuro a Total of 3 times for Check ups. She Told Me After The 3rd Time I Wouldn’t Eve Have To Go Back. My Primary Doctor Is Are Of My History and Gave Advice About Vaccinations But I Mentioned About Having Restless Legs From Time To Time And He Didn’t tell me where or not Thats Related to The GBS. I Wish There Were A Doctor That Specialized ONLY in GBS Because How Does My Primary Know Whether Or Not Im Having Residual Effects When They Don’t Know Much About The Disease.

      Also, Anyone Els Having Restless Legs? I don’t have it every night, but some Nights I Do.

    • Anonymous
      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.


    • Anonymous
      October 17, 2009 at 12:06 pm

      I empathize with you. My neurologist was awesome diagnosing me initially but has very little knowledge about post residuals etc. There is a Dr at the University of Minnesota named Gareth Parry. He has written books on GBS and residuals. I actually spoke with him a few years ago but haven’t had any luck with emails recently. I took part in a study with him on gbs and residual fatigue. He anticipated it would take 5-6 years to complete. I too wish there was a foremost authority to consult with to inspire some confidence or at least inform us more on gbs residuals.

    • Anonymous
      October 21, 2009 at 9:17 pm

      No! The doctors do not know a lot about GBS. To me it still seems like really nobody does. I guess because only 2,500 people a year get it that there isn’t a whole lot of money that can go into all the research they need to do on this! I had it 1st when I was only 11 years took 20 specialists at Childrens Memorial Hospital one month to diagnose me.

      As for now, at least most of them have heard about it but they still do not understand it.

      When I had GBS the 2nd time I was in an HMO (lovely!) and I had to go to my main doctor to get a referral to a neorologist and instead of giving me the referral she insisted that I was probably just depressed and gave me a prescription for depression. I came home called GBS foundation and got the latest research report that showed the symptoms I was having was probably GBS and faxed it to the doc’s office and insisted I immediately be given a referral to a neorologist or I would sue her! I had the rerrral 20 minutes later! That was just 9 years ago…so, doctors should have been more aware of the symptoms.

      I went to a GBS symposium at Marian Joy in my area that was headed up by a supposedly expert in GBS. She announced to the group that you cannot get GBS more than once! I stood up and announced I had it twice (that was before the 3rd time) and then a guy in the front row in his 60’s got up and said he had it 3 times! The doctor was stumped! Nice eh?

      So, to summarize, I think this forum is the perfect way for us to reach out to each other to try our best to understand how it is affecting us and any solutions anyone has found to help.

      I have not had restless leg syndrome. But, I do get a lot of colds…that’s it.

      I wish I had millions of dollars to donate to the organization to have much more research done.

      Take care.

    • Anonymous
      October 22, 2009 at 8:23 am

      [SIZE=”2″]Good Morning.
      WE not the doctors know more about GBS and CIDP Trust me we really do. (Lakoda)[/SIZE]