| I have Guillain Barre Syndrome, I was diagnosed in April 2008. Its a rare disease, affecting only 1-2 people in 100,000. I would like to hear from any one who has or has had this or who has a family member who has had it I don't know any one who has this disease, I had never even heard of it until I got it! Thanks.... | |
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| Hi, glad you commented. I was put into the hospital and given IVIG treatments. These are immune globulin (human), I was given one iv bag every day for 5 days, the nurses called it "liquid gold" because each bag costs $6,000! The doctors said it would shorten my recovery time and make my recovery better. They had also mentioned plasmapheresis. I don't have this in as severe form as some people that I have heard about, I didn't require a ventilator (thank God!) and I wasn't paralyzed in any way. My face was affected very much, but only in the first week. I couldn't talk, couldn't chew my food, but I could swallow. I had to use a straw and pinch my fingers around it to be able to suck the liquid into my mouth. When I ate, I had to take very small bites and chew and then take my finger to move the food around to chew it enough to swallow. They had given me massive dosages of prednisone the first few days (80mg per day) and then did the spinal tap and sent me home with no instructions on the prednisone, called doctor and said to start on just 40 mg per day. Then was put into hospital for IVIG treatments. I haven't seen tremendous results yet, but the doctor said I had extensive nerve damage and could take up to a year to recover. My face is much better, can speak and eat and have no paralysis, just some residual weakness that may be permanent, but I can live with that. I still have a lot of weakness in my legs and some in my arms, but I am able to walk, but just not for too long or for too far. My balance is not good, but I don't feel as if I am going to fall. I'm wanting to be able to communicate with any one who has had this to compare notes and experiences, although I know every case is not the same. I have read on the internet that in 60% of the cases, there is no known cause. I have read that the flu shot is sometimes held responsible, but I have read that this is rare. The doctor asked me if I'd had a respiratory infection, which I hadn't, or if I'd been sick, which I hadn't. Did the person you knew who had GBS have any illness just before being dx with it? How badly did they have it and how long did it take to recover and did they have any paralysis or require a ventilator when first ill? I was dx in April, 2008 and have the tingling in my arms and the back of my neck come and go, and I'm assuming this is from the damaged covering on my nerves still flaring up, but I don't know why it doesn't do it all the time. Maybe the ivig treatments helped with this? I don't like to keep calling the neurologist every time a new symptom or question comes up, so I usually wait till my next appt. I have moderate pain in the middle lower back when I stand or walk, but it subsides as soon as I sit down or lay down. This I can't figure out as most back pain doesn't go away so easily. But I'm sure not complaining! I can't work for any length of time as I get weak and fatigued, just have to take frequent rest breaks. Its frustrating to tackle a chore that should take maybe an hour and it takes 3 hours! I told one of the nurses when I was in the hospital that I was always healthy and hardly ever got sick even when every one else was sick, and she said she'd had a lot of GBS patients say the same thing. So go figure! If I do too much one day, then the next day or two, I'm completely wiped out. I still consider myself very fortunate, as I will recover from this, and with M>S> and many other autoimmune diseases, its a life long and some times fatal condition. I've told people that if I'm one or two people in 100,000, why couldn't it be like in the lottery instead of this? Guess my number just came up! Hope some one will respond, regards..... | |
| Pres FDR had it He did not have polio His most probable cause of death was advance Autoimmune Hemolytic Anemia that his doctors missed He got too close to the vapors of warfare (a chemical exposure) when as Assist Sect of the US Navy in 1917 he got as close to the front lines as they would let him get. On the return voyage he came down with a 'strange influenza' Do you recall a serious flu or any flu-like symptoms such as diarrhea unrelated to dietary issues? |
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