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Dave - I'm glad you commented. It's been 7 years since Jim fell to GBS. He was "out of it" for 4 years. How do you type? Jim's fingers and hands don't work as a result of the years of atrophy. I just visited with him this weekend and he is hanging in there. He is resilient and clings to his faith. If you do anymore research, let us know. We will be glad to help as we are able. I'm sorry you lost your chosen career and don't like writing as well. GBS has allowed me to write a book about Jim's experience. I do this on Jim's behalf because he is unable to write. You can visit the facebook page for our book; Faith, Angels and overcoming GBS. The Jim McKinley story. Hang in there! I hope things improve for you.

It seems the accuracy of the information on GBS is sketchy at best. You all have increased the number of cases begun at the top and going down significantly. You are correct in saying "they" don't know much about GBS.

Nebretta and gbsguy - Jim is doing well now. He is wearing glasses but vision remains a problem for him. Jim has no ability to walk or use his hands. He requires much help in daily tasks. We remain hopeful that he will improve. He has a good attitude and holds fast to his Savior. He sees GBS as a way to reach out and help people he would never have met otherwise.

Thanks for all of your comments. Part 2 will appear this week. We will be praying for all of you to recover.

I too had a hard time getting my GBS diagnosed. Mine started with both feet tingling and feeling like they were asleep. I went to 2 ER's and my Internal Medicine DR (who is basically my family doctor) and none of them could tell me what was wrong. I was given some Neurontin for what they thought was neuropathy and sent home everytime with no diagnosis. I got continously worse each day and knew that I had to have help. My sister-in-law has several family members at various levels in another hospital and she contacted them. They had me to come to their hospital ER and I was immediately seen by a Dr there that also said "Neuropathy" but I needed to see a Neurologist that he recommended. hen I contacted that office I was told it would be 10 days before I could see him. I told them I could not wait and they said they would call if there was a cancellation. 5 minutes later I received a call from that offfice saying that his colleague could see me on Monday at 1PM. This was on Friday. So I waited and got worse over the weekend, but 5 minutes after I was in her office, she suspected what was wrong with me and had me immediately admitted to the hosptail across the street. Thanks to family connections I did not have to wait, but was immediately admitted. Testing was begun, the usual blood work, MRI, Electrical test, Spinal Tap and it was confirmed that I had GBS. By this time I was like a baby again. I couldn't do anything for myself hardly. I could not put my partial plate in our out of my mouth, so it stayed out for a long time. I could not brush my teeth, write my name, feed myself, turn over in bed, etc., etc., etc. IVIG transfusions were started and given for 5 days. After that, they thought I was no better, so thought I neede the plasm pheresis and this hospital was not equipped to do that, so I had to be transferred to another hospital, put in ICU and given a different Neurologist. After his initial exam, he thought that the IVIG was beginning to work and so he put me in a regular room for observation and began very minimal therapy. After a week I was sent to a Nursing Home/Rehab facility for rehab 1 1/2 hrs. once a day. This was like hell. By this time I had lost all control of my bodily functions and was just like a baby. It was hell. Staff is limited in the type facilities and my family had been and had to continue staying with me day and night. I could not lift either of my feet off the floor without help and they told me that Medicare would not pay any longer if I didn't show progress. They did not help me, only said, "lift your foot" Anyway, I had another problem during all of this and had to go back to the large hospital for colostomy surgery due to a recto-vaginal fistula. This may have been a blessing in disguise. After a weeks recovery from the colostomy surgery (this is another whole life changing experience), I was sent to another rehab facility that was great, but it was short term and I could only stay there 18 days. At that time I still was not able to go home, but needed more therapy so I was sent to a long-term facility where I stayed for another 7 weeks. They were wonderful to me and got me back up on my feet to where I could walk with a walker. So after 4 1/2 mos, I finally got to go back home with a wheelchair and a walker. I continued out-patient therapy for 4 more mos. and slowly got where I could walk (like a duck or a drunk but wobbling). I now go to fitness therapy when I can or want to. I am back driving a little, back playing piano in church, typing, doing light housework, etc. My life has changed dramatically, but I am thankful that I still have a life. I just wish that the medical community knew more about this disease. Hugs & Blessing to all and contact me if I can be of help to you in anyway.

As I read about the others, I feel very fortunate that I was diagnosed rather quickly. On a Sunday, I took myself to an ER because I knew I was getting weak. I "think" I remember hearning the words Guillian Barre. However, I was just sent home. By Monday, I had to crawl to the phone for 2 hours - because I was loosing my ability to move. I was taken to the hospital and recall my family doctor giving me a spinal tap. They said by Tuesday it was GB, I believe. I was started on Plasma psoriasis - 10 of them, I believe. I lost all control also. Could not hold a fork, paralized etc. I know I am very fortunate. I believe I was in the hospital about 45 days. I was able to go back to work as a teacher in January. This all started in early October, 1988. We do know what one another is talking about. Nebretta