Guillain-Barré Syndrome

[TigerFeet]

DH was diagnosed with Guillain-Barré Syndrome yesterday. His immune system is attacking his nerves, causing numbness and muscle weakness. Currently he's completely paralysed from the hips down so unable to walk and needs help to pull himself up to a seated position. HIs arms are better but his grip is weak so for eg he can't unscrew the lid from a toothpaste tube.

Ten days ago he was completely normal, walking, driving, being a pita, all the usual day to day stuff.

This has come as a huge shock to us (obv).

He's currently in HDU in our local hospital as there is a chance the paralysis may spread to his diaphragm meaning he will have to be intubated.

He has started treatment but we have been warned he may get worse before he gets better.

We're looking at a recovery time of months (or possibly longer)

I'd be really grateful to hear from anyone who has experience of the above, I'm particularly interested to hear how long it took to recover and if there were any residual problems.

Thanks :)

hope your son has a speedy recovery too, it must be very scary. A client at the RDA I work at had this and has made great strides in her recovery. She is certainly not wheelchair bound and went back to her own high school. I am not sure if she is fully back to health but know she made great progress. Horse riding was fantastic for her as it helped her muscles literally 'remember' what they should have been doing to get her walking again. She had memory loss and did not know she had previously been on a pony but took to it well. your son would not have to have been riding before though obviously for it to help, riding just stimulates the very muscles needed for walking and can be fantastic physio as it is so motivating for many people. maybe something to look into further down the line. Hope it all starts to look better soon and he might make wee bits of progress

How awful. So sorry to hear this. Did he have the swine flu vaccination? Excuse me asking.

I hope you have good news soon.

My FIL had this two years ago.

He was given antivirals and was briefly on a ventilator. The drugs worked like magic and the speed at which he got better was amazing.

He was in hospital for just under a month.

He was told it would be a year before he would walk again but within weeks he was walking with a sick and within a few months he only used the stick so that people would give him some space while he was out walking ( as he would be wobbly if anyone accidentally knocked him)

He walks fine now without the stick and easily does a 2 mile round trip to pick my DS up from school once a week

He is 70 and was determined to get back to normal so did all of his exercises religiously

From memory there is a GBS society that gave us lots of advice about what to expect.

Wishing your DH a speedy recovery.

BTW - my FIL blames his annual flu jab for the GBS and has refused to have the swine flu jab or any winter flu jabs since.

Tigerfeet im sorry to hear about your DH. Thought id post as i have some first hand experience of neuro-unit and neuro rehab as a patient. i spent a while in hospital (not going in to too much detail) but i spent my whole time in neuro rehab with patients who had GBS. As far as i learnt from them there are two types and in one you recover slower than the other but in both you recover! When i started with them i had started to hold furniture and walk and they were in wheelchairs but they were walking quite well four weeks into their stay and surpassing many of us not GBS patients, leaving the wheelchairs behind! The key is excellent rehab and physio-therapy.
Please have hope, it will all go well, takes time. Push for good rehab and keep his spirits up, beleive me it is very frustrating but there is great recovery from GBS so do not worry .

My mum had this when I was a teenager in the 80s; my memory is a bit hazy but she was in Queen's Hospital Neurology dept for weeks/months, and she was also ventilated for at least a couple of weeks. I remember visiting her when she was finally off the ventilator, she was very weak and fragile then, and it was (needless to say) a scary time for her.

When she came home she was still very weak, and she could not manage stairs easily or walk quickly and needed lots of rest and looking after, but she did gradually build herself up again. Recovery was long, months rather than weeks, but it was really good to see her getting stronger and stronger again.

She got, after a year or maybe a bit longer, pretty much fully back to how she was though - she says her legs used to ache sometimes, but then it turned out she also had something else (genetic) which had totally different origins and that influenced everything too. It's possible that this other factor made the weakness worse and recovery longer, but the GB was definitely the main thing.

It was scary and it took a while, but she did get back to being well and strong, and went back to work, and the GB became a thing in the past and aside from the aching legs (which might not be GB anyway) hasn't been relevant for the last thirty years - so it came good in the end. Best of luck to you and best wishes for his recovery x

I'm glad things are looking a bit more positive Tigerfeet and the drugs have halted the progress of his illness. The experience of going from being well to being very poorly and needing long term hospital care is a scary one - so don't be surprised if either of you get periods of feeling a bit down or emotionally exhausted.

I'm sure as others have said the neuro unit is the best place for him to recover. I don't know if he can have a laptop in hospital, but if he can, Skype might be worth considering - so you can talk to him and he can see a video link of family/friends if visiting is hard.

Wishing him the very best for his recovery process, and remember to take care of yourself too

hi tigerfeet, how is everything? hope it's not any worse. hope you are getting some brief time to yourself too.

(as an aside - Kurri, I wonder if your DH knows my father? he's a microbiologist in Glasgow, based in a uni, but does a lot of work with local hospitals. Not a Campy bloke, but the go-to guy for anything Bacillus related.)