Does anyone on here know anything about this syndrome, or know anyone who's had it?
I've just found out today that my best friend has it. I haven't done any reading yet, & probably won't get to til tomorrow now, but if anyone knows anything about it, let me know. Would like to know a bit more. Positive stories would be good too.
She is having a spinal tap next week & blood transfusions over the coming weeks.
I know of one boy who had it and made pretty much a full recovery, but it can be very very dangerous, in particular if the paralysis reaches the breathing muscles.
My Mum had it in 1998 deteriorated extremely quickly over a 48 hour period and was airlifted by the Flying Doctors from Cobar to RPA Sydney. She was on Life Support in the ICU for a few days and wasn't expected to live. Her recovery was slow, painful and difficult but she did recover! It took about 10 weeks for her to start walking again with her frame, lots of rehabilitation, physio etc - I don't remember ALOT of the specific details as I was only 12 and it was only 6 months after my Father was killed so things were pretty traumatic all round. It is a scary and rare condition however is definitely survivable and I daresay now 12 years later they would have done alot more research than they had back then?? I hope she's ok hun, stay positive and keep by her side, she's going to need you in the coming months. All my thoughts and prayers are with you, definitely not something you'd wish upon someone but definitely something that she can fight through!! xox
I've never even heard of it but I thought I would offer you a
My friend has lupus which is probably nothing compared to this but I know how much I worry about her sometimes. So just know I am thinking of both you and your friend hun!
x
I've been able to have a bit of a read into it. Its good to know more about it & thanks for sharing your experiences.
I live 10 hours away from her, so can't be with her, & don't know very much about what stage she's at, or how far she is into it. I don't even have a number for her atm, been waiting for her to ring me.
I'm getting second hand news, from her mum to my mum. Her mum is up here too, so I'm not even sure how much she knows about where she is at. I'd think she knows a bit about it though being a nurse.
I'm taking from my reading that she probably won't actually 'fully' recover? She works in disability, was doing her RN last I heard, as well as doing hard physical work in the shearing sheds when needing a break from disability. Do you think she'd be able to return to these types of jobs? I'm guessing that probably depends on the person & their recovery though, huh.
Mum seems to think that being as fit as she would be after 5 months in the sheds, it might not hit her as hard & she might be ok, but I'm not so sure. Now I've read about it, I don't think that'd matter much at all.
Hope she has a quick recovery, I think it depends on how quickly it is diagnosed. My mums cousin had it about ten years ago now, but he kept ignoring the symptoms, even we he could barely walk or move he refused to go to the hospital. He eventually collapsed and went into a coma and needed a ventilator so worst case scenario. It's taken him a long time but he can now walk with a walking stick but he has never got his strength back.
If your friend is strong and has caught it early enough she could make a good recovery.
A friend of mine had this when we were in high school...and I think she's alright now? I'll have to ask. I only remember the name of it, because someone gave her some Guylian branded chocolates, and fiddled with the name on the box so it read Guylian-Barre. So that's my helpful contribution.
Well, I was just talking to her sister, who's doing nursing at uni, so knows about it.
She hadn't even heard yet, coz apparently A has no clue about it what so ever! She's like, 'oh, its just a viral infection, I need some antibiotics, but I'm not allowed to work'
Since T (sister) knows about it, hopefully she'll make her understand not to ignore it if it gets worse. A's a person who looks after everyone but herself.
T will make sure she's ok though. Even though she's up here too, she knows how serious it can be & will keep checking on her via phone. A & their mum don't have net access or anything, so don't think they'll look into it or anything & just go off what the doctors say.
Clover I have had it and so has a friend. She made a quick recovery (was paralysed for under 12months) I was paralysed for 18months. It has a quick onset and fairly slow recovery. Starts at the legs usually and works its way up to the heat and recovery is from the head down. Can't go into to much detail but I might be able to answer some questions you have.
Basically it caused demylination of the nerve coverings. So if you imagine your nerves covered like electrical wires with GBSyndrome it eats away some of the lining of the nerves causing damage. The good thing with GBS is you recover from it. It actually is almost exactly the same a MS except with MS onset is slow and usually continues to deteriorate and many times eventually leads of death (not always but depends on the speed of the disease process) With GBS you recover. I have been left with some permanent damage but its nothing I can't live with and no one would know unless I told them.
My friend who was much older then I was when she got it had a terrible time recovering. She couldn't do anything for herself, had a traceostomy (tube in through her neck to breath for her) , her husband left her and the list goes on (but now 3yrs on she is married to someone else and has a baby) My recovery was much slower but as I was a child not as difficult.
I am happy to talk in my depth if you want about it. Rest assured that your friend should make a great recovery but it is a long process and something that usually shapes the rest of your life. After the initial illness there is then many months of physio etc. Myt friend was in hospital around 8months (including a rehab hospital) I was 6months and got out before I was walking again as my mother did my physio been a RN.
When I had it it started when I couldn't get out of bed as my legs wouldn't work. My mother thought I was been lazy and dragged me out before realising something major was wrong. She described it like I had suddenly gone spastic (in the limb sense) she took me to the hospital and they thought I had a brain tumour. I was airlifted to Campbell town childrens hospital and wasn't diagnosed for a few days (still thought it was a brain tumour)
When my friend had it she had similar symptoms and went to ED. Very quickly she deteriorated and was on life support for 2weeks. She couldn't breath so was ventilated. Eventually she came home to a rehab hospital and spent 6ish months there before going home. But now she is back to her old self (except has the trachie scar) and takes alot of pills.
I am an RN and midwife so although it has been many years since I had it I still lead a pretty normal life now. The worst is the pins and needles and the pain which is actually from long term. I wasn't near this bad to start with. Apparently not every one thats had GBS gets the polyneuropathy afterwards which is what I have. Other then pain I am completely normal, can work in shearing sheds, ride horses and work as a middy.
Thanks Mildez. She already can't have babies naturally due to endo, so thinking there's a chance this could do permanent damage had me worried. She's already been through alot.
I do remember her saying something about them talking about ms, that was before christmas. Maybe she had the original episode back then & it wasn't so bad, but she is one of those who has relapses?
I'm not sure. Hard to know when you can't ask yourself. But if that's the case, maybe she's past the worst of it.
There was a seperate link to the relapse part of it & I think it had a different name. Will have to have more of a look later.
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Guillain-Barré Syndrome
So that's my helpful contribution.
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