AnonymousOctober 5, 2006 at 2:34 pm
Hello Everyone. Just Wanted To Drop A Thread That If Anyone Out There Needs Support, I Check In Here At Least Once A Day. I Was Diagnosed Back In September Of 2001. Very Bad Case. Total Paralysis Including The Lungs. Was On The Vent For A Month And A Half And Off My Feet Completely From September Till March. If There Is Anyone Out There That Needs Any Help That I May Be Able To Provide, Please Just Hit Me Back On This Thread And I Will Answer Any Questions That I Can. Have A Great Day, And If You Are In The Middle Of The Storm, Please Remember That It Gets Better!!!!
AnonymousOctober 5, 2006 at 3:44 pm
I am a nurse and just happened to stumble across this web site as I was searching for information.
My brother-in-law got very sick this weekend and now cannot move. He has been diagnosed, tentatively, w/ GBS. However, we are still waiting on some more tests to make a definative diagnosis. They have started him on some IgG, and fortunately he has not had any breathing difficulties.
I was wondering if anyone knows of any GBS specialists in the country. He currently lives in New Hampshire, but my family is willing to relocate him for treatment if needed. Thanks.
AnonymousOctober 5, 2006 at 9:01 pm
One thing I forgot to mention in my previous post (on a different thread), was the fact that they were prepared to start IVIg so soon, seems to be a really good sign at least. Often, doctors arent as proactive, and wait for the patient to lose the ability to breath, and still they umm and aahh. Remember that GBS can take between 2 to 4 weeks to reach its ‘worst’, but hopefully the treatment with IVIg will help to at least halt the progression. Please keep us updated.
There are two liaisons in New Hampshire, I will private message you their names and telephone numbers. If you contact them, they may be able to help.
AnonymousOctober 13, 2006 at 11:41 am
Hi. Sorry To Hear About Your Brother-in-law. I Was Very Fortunate That I Was Diagnosed Very Quickly. The Doctor Listened To Me, Did A Reflex Test And Told Me What He Thought I Had And Called In A Nerologist. Sure Enough, He Had Correctly Diagnosed Me With Gbs. As For Specialists For Gbs, I Have Heard That The University Of Pittsburgh Has A Great Neuroligical Dept, That Has A Good Reputation With The Successful Treatment Of Gbs Patients. My Only Advice Is To Be Patient And To Encourage. Maybe Through This Forum You Can Find Somone Close By That Has Had Gbs Before. If You Can, Get Them To The Hospital To Talk To Your Brother-in-law. I Was Completely Paralyzed And On A Ventilator And A Guy That Had Been Afflicted With Gbs In The Past Came In And Talked To Me About And Even Though Things Were Slow In Recovery, I Always Remembered Him Coming In And Talking To Me And Letting Me Know I Would Get Well. Hope This Helps. Hang In There.
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