Help

Hi I just came home two weeks ago from a rehap hospital,my gbs was caught rather quick had the plasma at acute rehab then moved to a long term..still in a wheel chair and had a fall yesterday..when they diagnosed me I had the lumbar punch and every other tesy for gbs..all came baxk negative but because all else was ruled out and I had all the symptoms of gbs here I am do not have a good nuerologist, came home addictted to oxy and went through withdrawls...I am going to start out placement therapy soon but feel very alone and scared because I have to support.

thanks...sorry that my thoights are scattered...

So sorry for your suffering. Did they do thorough EMG testing?

Yes they did every test and by process of elemination diagnosed me with gbs. do you have gbs ?

There is, to my knowledge, no definitive "test" for GBS. That's why it's a syndrome. They look at all the symptoms and rule out other stuff, and what they're left with is a diagnosis of GBS.

That being said, I'm sorry to hear of your condition. You didn't mention when the onset occurred, but it sounds like you are making progress. Try to stay positive, recovery from this takes a long time. Good to hear you're starting physical therapy. That is really important for recovery. Good luck!

You will get thru this Sammy. I was diagnosed in 1988. I am now 47 years old and doing pretty well. All my funtions came back but I do have severe burning and tingling thruout my body. And I tire easily. but at least I am walking agin and working 2 jobs. I am very active.

Hi Sammy,

Sorry you are going thru such a traumatic time. I was diagnosed on june 04, 2012. It took about 10 days to get diagnosed from time of my first symptoms. Mine started out with me waking up one morning with both my feet asleep and gradually progressed up my legs and to my arms paralyzing me. Went from walker to wheelchair in a couple of days. Went to 2 ER's and my Eintermal Medicine Dr. before I finally got to see a Neurologist who could tell almost immediately what was wrong and had me admitted immediately to the hospital. I too had a battery of tests and finally the MRI and spinal tap showed I had GBS. i was in hospital or rehabs for 4 1/2 continous months before getting back home. then I took out-patient therapy for another 4 months. I still go to fitness therapy and still use a cane some when I am out of the house. it has been a slow but steady recovery process. i have reached a plateau I guess and don't know if I will ever completly recover but I am so so much better than I was. I can't complain, but I am older (72) and retired so I don't have to get out and try to work anymore. Keep positive thoughts and do everything that your therapists ask of you and more. you will get better. If you don't have a Neurologist, find a good one and go to them. If I cn be of further help, please ask on here and I will try to help.

Kay

Dear Sammy: A lot of what you mentioned I am familiar with - I had GBS in the late 80's. I have met several people that had GBS - and in time, they were doing well. I am doing well - and to the best of my knowledge, I do not have any after affects. Once in awhile I feel extremely tired - but that does not happen real often.