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 :)

bump :)

Any advice on coping with long term hospital stays, both for the patient and for relatives also very gratefully received.

TigerFeet - I don't have any personal experience of GBS, but just wanted to say how sorry I am your DH has this horrible condition - it must be very scary for all of you.

I do know that the author Joseph Heller (of Catch 22 fame) also had this illness, and wrote a book about his experience here which might be of interest to you and your DH.

Wishing him a good recovery

Oh and for long term hospital stays - start a new thread for advice with a different title - people may not answer here because GBS is uncommon, - but many will have experience of long hospital stays. HTH

OK - coming back to this. I've just been chatting to my DH and mentioned your post. He's a research microbiologist and say he know a bit about this illness, and also knows a Doctor who is an expert on it. So if you think it would be helpful, my DH will come and chat to you on this thread and might be able to answer your questions.

Gosh how scary for you all Tigerfeet. I don't have any advice but couldn't not post. Hope all goes well and he recovers quickly.

Thanks KurriKurri that would be great. Funnily enough both dh and I have been microbiologists in our former lives but not research, working in the food industry. Interesting about Joseph Heller, I will look at that book, and good idea to start another thread.

Thanks Buda, good wishes are always welcome.

I have a friend who had sudden and severe GBS and was paralysed from the chest down. He had a long hospital stay but made good progress and now is almost back to normal, he can walk and do all normal things, but is still weak in his leg muscles and lacks balance, but is improving all the time.

Best wishes to your DH for an excellent recovery.

Hi, this is Kurri's DH. I'm not a medic but a scientist that works on Campylobacter (one of the bacteria with strains that can cause Guillain Barre Syndrome GBS). Sorry to hear that your DH has been diagnosed with GBS. I've only a basic knowledge about it but have been to a number of lectures on it by a specialist in Glasgow. I found a website that has most of the info see below. Basically a bacterial infection or foodborne illness can set about a reaction in the body that produces specific antibodies that 1) attack the bacteria and a few weeks later start to 2) attack the patients own peripheral nerves. This later process is when you notice you've got problems. I think there are drugs that are used to slow and stop the antibody attack once GBS is diagnosed, but any nerves damaged up to that point will take time to repair and that's why recovery time is so long.
link to GBS info
link to specialist in Glasgow
I hope this helps? Let me know if there is anything else I can help with. Wishing you all the best.

My Mum spent 6 months in rehab following chemo & lots of the others there were GBS sufferers/recovering from GBS.

You are in the early days sadly, but something to bear in mind for the 'other side', find out all you can about rehab, maybe a residential place (rare but there are some around), and - not sure how to phrase this - get him to be as determined as possible, use all resources available, be as stubborn as hell, etc about getting moving again. Some of the people my Mum knew had kind of given up and the physios/docs/etc couldn't do much for them, those that were bloody-minded seemed to do the best (probably applies to much of life I guess).

Best wishes to your Dh & to you, it must be such a shock.

Thanks :)

Selks I'm pleased to hear that your friend has recovered so well. Can I ask how long he was ill for? Always good to hear of recoveries, looking at him now I need to hear that he WILL be ok, eventually.

MrKurri, I'd read that it can be caused by a campy infection, as food microbiologists we both used to work with it a lot but that was years ago now. He hasn't had a bacterial infection, the cons thinks it was probably caused by a viral throat infection he had a couple of weeks ago. The links are great, thanks, by far the most comprehensive information I've seen yet. The immunoglobulin treatment has already been started so hopefully any damage being done is now being limited. He'll have electrical tests on his nerves next week to determine the extent of the damage which should give us more of an indication of recovery time. He's going to be moved to our local Neuro unit in the next couple of days, we're a long way from Glasgow but I shall bear the specialist in mind should I have any issues. Thanks for taking the time to post.

JKS luckily for us DH has private health care insurance through work so we may have more options open to us for rehab if required. His determination to get well is most certainly in place. We take so much for granted, the ability to pick up a child and give her a cuddle, the ability to take oneself to the toilet, the ability to unscrew the cap from a toothpaste tube. He's currently determined to be able to do those things again and we will do all we can to make sure he stays that way.

I think having DC will force him to stay determined for the reasons you describe, looking back the man I'm specifically thinking of who kind of 'gave up' was single, no DC, etc. Moved back home with his Mum after leaving rehab.
The rehab place was called Harrowlands in Surrey (not sure where you are) was fab. (my Mum had electric wheelchair races in the hilly garden )

My friend had GBS when she was in her twenties. She had a virus because she was rundown after a marriage break-up.
Her boyfriend at the time visited her every day after work.
She went on to marry him and had two children.
She had a rough time in hospital and was in a wheelchair for quite a while.
There were no long-term effects and she has had good health since then.

My dd was diagnosed with this at 2½ having been passed from pilar to post for a 2 weeks or so - she would wake screaming in themiddle of night or strt screaming in day as she had a spasm, she couldnt walk all that well and would fall easy was constipated and cried alot - we were hospitalised for a couple of weeks as we had endured the worse alone being told she was having night tremors ! It was horrific but we were lucky it didnt get to the point where she owuld need ventilated as if that had happeend when we were being fobbed off god kows what the outcome would have been. We didnt have the heomoglobin treatment and they tested late for thyroid affects as it could knock that out of kilter. After she was over the danger period we were let back home and started physio that went on for about 9 months. No after affects but then we did have youth on our side. I hope your dh gets better soon , its an awful time waiting to see how bad it gets but we were always told beign in hospital wa the best place till it has peaked.

Hi i can comment from a nursing point of view having nursed GBS patients over the years.

When they get sick they get sick...no two ways about it.
BUT
When they begin to recover it is amazing and fantastic and warms the cockles of your heart, truly is a brilliant thing.

I work in intensive care and high dependancy units.
So patients are very sick at first. Take it day by day and in your stride. Expect pneumonias, chest infections and steps forward then steps back...lots. It is all part and parcel.
Expect things to look bleak. BUT then expect some days to be small steps of sunshine.
Unfortunately it can and does take many months to recover.

The BEST days for us as nurses are by far those days when a GBS patient, who has been with us for months (we get to know and love their families too) comes to knock on our doors to say "im off home now, thanks for everything".

We all without exception get lumps in our throats and shed a wee tear. They DO get better, they DO do well but its a hard road.

SO chin up chuck, it will be ok, i promise x

i mean the immunoglobulin treatment - dd is 8 now .

A friend of family had this in his late 20's. He was paralysed and almost needed ventilated but pulled through before they needed to do it. Within a few months he had fully recovered apart from some chronic niggling pain in his legs.

Hope your dh gets better soon :)

My friend's dh had this a couple of years ago. It took a lot of rehab but he is now back at work and coping well. Not quite the same as he was - gets very tired - and working less hours now. Wish you all the very best. xx

He's on the move, again.

He's quite stable at the moment and his breathing test results are reasonable so he's being moved to a general ward as they need the HDU/ITU bed.

Tomorrow he's being moved to the neuro unit, 60 miles away.

I know we have a very long road ahead but for now he seems to be avoiding intubation which is such a relief.

Thanks so much for sharing your stories. Cherrychoo, I told him what you'd posted, it really made him smile. It's easy to forget in the here and now that there will be a good outcome. We need to be reminded every now and then that he is going to get better.

His arm strength and grip are still deteriorating slightly but other than that the progress of the GBS seems to have slowed right down.

He doesn't even look ill. If you could ignore the canulas and the oxygen tube in his nose you'd think he was perfectly healthy. He's sitting up, talking normally and looks all pink and rosy. Then his foot falls off the foot stool and he can't get it back on again.

It's been a very surreal few days. It took a week to get the diagnosis and in that time he was on the general ward (in the wtf corner as I have come to know it in my head). Within hours of getting the diagnosis he was in HDU wired up to every machine known to man, being checked every half an hour to make sure he could still breathe properly. Now he's on a general ward again.

ok, now then, make sure you nag him (and i mean NAG him) about deep breathing excersizes. Its VITAL that he does these every hour...he MUST MUST MUST keep his chest clear.

Neuro unti is GOOD tiger, honestly, its the best place for him, they know GBS inside and out. They will have THE best physios and nurses and Docs. Much better than a general ward or even HDU...infection problems and too generalised, not specialised enough.

Good, all sounds good...remeber "chin up chuck" its all good.

i second cherrychoo's instructions about breathing exercises to try to prevent infection... important for rib fractures etc too, as shallow breathing clogs everything up.... nag the shit out of him to do it!

A very dear friend of mine had GBS about 12 years ago. She was completely paralysed for several weeks and in HDU and not expected to survive.

Against all expectations, she made a complete recovery. I think she was in hospital for about 3 months in total.

She is the most vitally alive person I know. My life is richer for having her in it. The medics did an amazing job!

Nagging I can do

No one has said anything about breathing exercises . He has to cough a lot (which he's doing anyway, throat infection) and he has to puff into a magic box every four hours. I'll ask about that tomorrow.

I agree that the Neuro unit is good. Short term it will be an enormous pita but in the long term if it gives him the best outcome possible then we can live with that.

Gosh, Tigerfeet, I'd never heard of this. It sounds scary.

I have nothing helpful to contribute but it's great that you're getting lots of expert advice on here.

Wishing him a speedy recovery

Tigerfeet glad to hear hes doing okey dokey and has avoided the ventilation thingymabob. You take care of yourself too !