New Yorkers Please Read…

A year or two ago one of our members had contacted them about GBS and they were suppose to do the story, then all of a sudden they didn’t want to do it anymore. Maybe it wasn’t interesting enough for them.

Maybe this time around they’ll finally tell the story for all the world to hear.

I remember that it was Jethro who was in touch with the show, but then they weren’t sure that they would be picked up for another season? Another problem is that although GBS is somewhat rare, with a normal case of acute GBS (rapid paralysis, also somewhat rapid recovery), most doctors would figure this one out too easily. Usually their format is for the dx to take most of the hour, like some kind of poisoning that is rare. On House GBS is often mentioned when someone comes in paralyzed, but soon ruled out. But it would be great if they did do a story on it.

Hello~! I’m on Long Island, New York. I guess I would be willing to talk about my GBS story, even tho I’ve never been on TV lol. I’m not sure if this would qualify as a “mystery diagnosis” ? :
My GBS started in summer 1995…I was vomitting and lost almost 35 lbs in 2 weeks, and I had no idea what was wrong…I went to the ER for that problem, and they admitted me…they didnt know what was wrong, either, but they admitted me. While I was in the hospital my legs were getting weaker although I didnt know why…then one night, during a bad storm the hospital had a blackout, believe it or not, lol…I got out of bed to use the urinal and thats when my legs gave out. I fell, pulling all the IVs out of me…the room was dark, so I then crawled into the hallway to call for help…within a few days I was totally paralyzed up to my waist but they still had no idea why. Some of the workers even called me lazy for not getting up on my own. Finally they called in a neurologist who did a spinal tap and told them all immediately, “its GBS”…until that the hospital had [U]no idea [/U]what was wrong with me. I guess back then GBS wasnt as widely known?
Anyway, sorry to go on long~! If it would help get GBS before the public and more well known, I’d be willing to talk to the Discovery People, or maybe help them find someone else in NY…
Bill

I”m from Hyde Park, NY. GBS hit me 5/08/2005. Fell down when I got up to go to the bathroom in the morning. Husband couldn”t get me up, called daughter who lives 5 mins. away. I was limp. Thought it was a relapse of myasthenia gravis, neurologist was called–also thought it was MG and ordered me to hospital where I had 4 days of IVIG (they didn”t have enough on hand for five). Long story, still can”t walk and not sure I could appear on TV. The administrators of this forum must have a list of New Yorkers. I know Elzabeth Nesbitt lives in NY and another friend I met at the symposium in Nov. I also know of someone from NY who died because she was diagnosed too late. Maybe Discovery could do clips of some cases.

Peggy

Ben and I were watching a show on Discovery Channel a few weeks ago and saw a girl with GBS. I forget what show it was, but probably Untold Stories of the ER or something. I forget the girl’s name too, but she was a teenager. We were really excited to finally see something about GBS!

–Shan

Hi Sherry,
Sorry I’m late at reading this, but since I have CIDP, I don’t read through the GBS forum too often. I’m another person from Long Island, New York. I was diagnosed with CIDP in 1998. I don’t know if I’d be a good one to be considered because I’m a very introverted/inhibited person. I have not ever been able to stand up in front of people and talk. My nerves and the stress would do ALOT to me. The neurologist who treated me the longest and who knows me the best, is no longer in New York. My new neurologist has only know me for four months and would have no concept of how I was and how far I’ve come.

I’m always willing to try. I’d be willing to take the first step and talk to someone from the TV show, but my previous neurologist would be the one who would have to be involved and I don’t know know if he’d do it. I am too inhibited/too introverted to ask him.

Hello Sherry,
I should add that I also battle a low self esteem, which my school years did to me. Introverted might not be the right word to use, but I do keep “feelings” locked up inside of me. I’m still looking for the person who can really understand me. Only my dogs could do that. I talk through my writing, not through vocal words, to talk in front of people I’d be a mountain of quivering jello.

Back to the doctors though, that would be a problem. I didn’t like the doctor who diagnosed me and he was one of the three that told me I had no hope.