Guillain-Barre Syndrome

[livingwith]

I decided to tell my story after reading some of the others on here. My name is Richard Ross, I am a Sioux Indian from S.D. and am 47 years old now. I had GBS when I had just turned 18 in 1980, I woke up on a Wednesday and was lethargic all day, I thought maybe I had slept too much, but on Thursday could hardly move, then Friday morning fell out of my bed and could not get up and was taken to a hospital where I stayed for a week and they could not figure out what was wrong with me. I had absolut...Read the full article

[seaangel2364]

Hi Richard- My name is Shawn- Your story is familiar to all of us here in the forum. It's a great place to talk to others that have been struck by GBS CIDP. I was 39 when I got it, and am now 44. I was taking care of my 3 grand daughters, and didn't pay much attention to myself. Thought I just had the flu. Next thing I know my eye doc called wondering where I was, and she immediately called 911. Well all I know after that is I was in bed for a week (no clue I still argue that) and I was fighting 3 EMT's trying to put tubes down my throat. Considering I had NO strength they won. Next well a coma for a month and complete paralyzation.I heard the doctors say she won't live through the night, and if she here chances are slim at making the next 48.

Well that didn't set well with me (who could hear them in my coma) or my husband. He never left my side. When I awoke a month later there he was, and he said, " Arnold Swartzenagar(not spelled right)
is the Govenor of California." What I thought, because I couldn't talk.Anyway's I had complete renal failure, on a ventilator, tubes coming out of my neck, legs, God everywhere. I had double pneumonia
, strep pneumonia in my blood, and worse of all could only move my eyes.

I walk now if you can call it that. It was a long, long road that I'm still trying to walk. I have no balance, and fall all the time. Plus I can't feel my feet or fingers tips. I finally get to try this new treatment IVIG this month, as we moved and I needed a new neuorogist. The plasma pherisis was horrendous. Oh and memory???

Know your not alone. I felt so alone till I found this site and forum. People that understand? What?
It's awesome! I heard the pride when you said you were a Sioux Indian. Cherish that pride as many do not. This disease strikes young, old, men, women it makes no never mind. I say that this disease takes away a persons "normal." So Richard I hope some of my story helps you, and you don't feel so alone. I chose to be alone and withdraw, because everyone treated me different. Shawn's still in here people just in a bit of a different body. Take care and please let me know if I can help asa all. Shawn