Guillain-Barr Syndrome
Discussion
Has anyone had any experience of Reactive Arthritis?
Spent half of yesterday at the local Hospital getting diagnosed (well that bit took 5 minutes).
Been given Naproxen but only realised they didn't state the dose when I got home.
Walked from the hospital to town to get the prescription, then to the train home. I have chronic shin splints due to the zombie shuffle that now passes for walking.
Got to phone the doctors in the morning so hopefully will get an appointment this week.
Anyway, is anyone has suffered it, may I ask:
Thanks in advance, just a little bit terrified.
Edit: my condition turned out to be Guillain-Barré syndrome, so thanks to the Mods for changing the thread title.
Spent half of yesterday at the local Hospital getting diagnosed (well that bit took 5 minutes).
Been given Naproxen but only realised they didn't state the dose when I got home.
Walked from the hospital to town to get the prescription, then to the train home. I have chronic shin splints due to the zombie shuffle that now passes for walking.
Got to phone the doctors in the morning so hopefully will get an appointment this week.
Anyway, is anyone has suffered it, may I ask:
- How bad did it get?
- What treatment did you have?
- How long did it last?
- Any lingering symptoms?
Thanks in advance, just a little bit terrified.
Edit: my condition turned out to be Guillain-Barré syndrome, so thanks to the Mods for changing the thread title.
Edited by Smiler. on Monday 9th March 21:34
Thanks for the replies, pm's & good wishes. They all give a little comfort.
Things have gotten worse during the day. No real pain as such, I had sciatica in my youth which resulted in a double laminectomy as well as other broken bones.
The power in my legs, arms & hands has diminished to the point of barely being able to get up. Once up, the Zombie shuffle is OK but there is no strength in my limbs.
I can't even wash my hands properly.
The medication seems to have no effect but then without it, I could be a whole lot worse.
My Mrs has been brilliant though. I'm very very lucky in that respect. The dogs can't fathom what is up but they sense something isn't right.
Extremely anxious about the doctor's tomorrow.
Thanks again for the comments.
Things have gotten worse during the day. No real pain as such, I had sciatica in my youth which resulted in a double laminectomy as well as other broken bones.
The power in my legs, arms & hands has diminished to the point of barely being able to get up. Once up, the Zombie shuffle is OK but there is no strength in my limbs.
I can't even wash my hands properly.
The medication seems to have no effect but then without it, I could be a whole lot worse.
My Mrs has been brilliant though. I'm very very lucky in that respect. The dogs can't fathom what is up but they sense something isn't right.
Extremely anxious about the doctor's tomorrow.
Thanks again for the comments.
Well it's not Reactivate Arthritis.
A lumber puncture & several pints of blood later are pointing towards a rare condition named after two Frenchman (or something).
I feel much better being under proper care & that things are moving more quickly.
Waiting to see the neurologist but they're keeping me in as there's a risk it can spread to the respiratory system.
The treatment sounds awful, effectively being infected with a flu type virus as at the moment, my own immune system is attacking me.
So far, the care has been excellent from the ambulance crew to the A&E staff, doctors, nurses & everyone.
Go NHS.
A lumber puncture & several pints of blood later are pointing towards a rare condition named after two Frenchman (or something).
I feel much better being under proper care & that things are moving more quickly.
Waiting to see the neurologist but they're keeping me in as there's a risk it can spread to the respiratory system.
The treatment sounds awful, effectively being infected with a flu type virus as at the moment, my own immune system is attacking me.
So far, the care has been excellent from the ambulance crew to the A&E staff, doctors, nurses & everyone.
Go NHS.
Sooooo, the diagnosis is Guillain-Barré syndrome.
It's pretty rare, affecting only 1,200 in the UK.
It's also bloody awful, I have little use of my legs now & cannot even stand. My upper body is similarly affected, but not respiratory systems (which is comforting).
No idea how long I will kept in but they've told me to cancel all immediate plans.
Thanks again for the kind words & messages.
It's pretty rare, affecting only 1,200 in the UK.
It's also bloody awful, I have little use of my legs now & cannot even stand. My upper body is similarly affected, but not respiratory systems (which is comforting).
No idea how long I will kept in but they've told me to cancel all immediate plans.
Thanks again for the kind words & messages.
An update on things a week after admittance to hospital.
I've been on a respiratory ward for 7 days. Treatment for the condition lasted 5 days & was fairly innocuous (from a reaction point of view) although long, sometimes lasting 5 hours to complete the IV infusion.
The treatment is not designed to cure, rather to arrest the progress of the condition. I haven't had confirmation of this yet but the symptoms don't seem to have gotten worse.
I have been given a wheelchair & that has lifted my spirits a bit. It's great to be mobile but everything aches constantly from the waste down.
I was really sick towards the end of the treatment as a result of being bedridden for six days.
I'm to spend a further 4-5 days on this ward before moving to neuro rehab. Then, so they tell me, the hard work starts.
By all accounts, I have been very lucky in getting a diagnosis & treatment so soon after onset.
It has however put a lot of strain on things at home, mainly for my wife. Friends & family have closed ranks to pitch in which is a relief. We're lucky to have them.
On the whole, the nursing staff have been excellent & I'm fortunate to have access to the NHS.
I've seen an awful lot over the last week & it's totally changed my perspective on some views I had.
Finally, thanks again for the messages of well wishes & support.
I've been on a respiratory ward for 7 days. Treatment for the condition lasted 5 days & was fairly innocuous (from a reaction point of view) although long, sometimes lasting 5 hours to complete the IV infusion.
The treatment is not designed to cure, rather to arrest the progress of the condition. I haven't had confirmation of this yet but the symptoms don't seem to have gotten worse.
I have been given a wheelchair & that has lifted my spirits a bit. It's great to be mobile but everything aches constantly from the waste down.
I was really sick towards the end of the treatment as a result of being bedridden for six days.
I'm to spend a further 4-5 days on this ward before moving to neuro rehab. Then, so they tell me, the hard work starts.
By all accounts, I have been very lucky in getting a diagnosis & treatment so soon after onset.
It has however put a lot of strain on things at home, mainly for my wife. Friends & family have closed ranks to pitch in which is a relief. We're lucky to have them.
On the whole, the nursing staff have been excellent & I'm fortunate to have access to the NHS.
I've seen an awful lot over the last week & it's totally changed my perspective on some views I had.
Finally, thanks again for the messages of well wishes & support.
Thanks folks. Making progress on one front but hitting problems on others.
Haven't slept a wink for a few days due to lower back/upper leg pain. The lack of sensation & mobility is making me stretch for things I normally wouldn't. Difficult to get relief from the pain, hence an 03.30 post.
.......My 1yr old niece contracted it and in the space of 4hrs of first noticing a difference, was paralysed from the waist down.....I guess the speed of that is due to her size.
I'm a big bloke so it took a fair bit longer to get a hold.
It's difficult not to think that if a little further investigation at A&E two days before being admitted had taken place rather than triage just punting me off to the on site GP surgery, I might have been spared the worst of it.
But then again I was under treatment within 12 hours of admittance & they might have delayed diagnosis anyway until further signs appeared
Either way compared to some, I've gotten off very lightly.
And in some bizarre way, I'm glad I've gotten to experience some of the things that I have in the past week or so.
Actually, that last bit sounds Barking. I'll come back later to explain. It's now 04.05, it took a while to type this & I need to stop.
Haven't slept a wink for a few days due to lower back/upper leg pain. The lack of sensation & mobility is making me stretch for things I normally wouldn't. Difficult to get relief from the pain, hence an 03.30 post.
renmure said:
A friend of mine who was an international football player.....
Was that the chap who played for Celtic? arun1uk said:
.......My 1yr old niece contracted it and in the space of 4hrs of first noticing a difference, was paralysed from the waist down.....
I'm a big bloke so it took a fair bit longer to get a hold.
It's difficult not to think that if a little further investigation at A&E two days before being admitted had taken place rather than triage just punting me off to the on site GP surgery, I might have been spared the worst of it.
But then again I was under treatment within 12 hours of admittance & they might have delayed diagnosis anyway until further signs appeared
Either way compared to some, I've gotten off very lightly.
And in some bizarre way, I'm glad I've gotten to experience some of the things that I have in the past week or so.
Actually, that last bit sounds Barking. I'll come back later to explain. It's now 04.05, it took a while to type this & I need to stop.
Just a quick update.
I've been in hospital now for 18 days. I'm able to stand (aided) & the chronic back/leg pain has receded to almost nothing.
I'm getting good exercise by using the wheelchair (solid tyres & ramp make for an excellent workout).
Walking is a way off yet though so my biggest anxiety (number 2's) will remain for the moment. Anyway enough said about that, spirits remain on the positive side. Especially when I see the courage of some of the other residents on the rehab ward.
There was an item in the Daily Mail yesterday about GBS, the woman in the piece contacted my Mrs to give some encouragement when she was panicking just after I was admitted.
I'm very moved at how kind people have been.
I've been in hospital now for 18 days. I'm able to stand (aided) & the chronic back/leg pain has receded to almost nothing.
I'm getting good exercise by using the wheelchair (solid tyres & ramp make for an excellent workout).
Walking is a way off yet though so my biggest anxiety (number 2's) will remain for the moment. Anyway enough said about that, spirits remain on the positive side. Especially when I see the courage of some of the other residents on the rehab ward.
There was an item in the Daily Mail yesterday about GBS, the woman in the piece contacted my Mrs to give some encouragement when she was panicking just after I was admitted.
I'm very moved at how kind people have been.
Update:
Things going well for me, strength increasing slowly but steadily apart from arms/shoulders used for wheeling the chair, which are rapidly improving.
Eating well & getting a lot of exercise.
Had a problem with the cycle machine (used from the wheelchair). The solid tyres don't grip on the linoleum floor so the whole chair with me in it constantly slid backwards.
My mate from PDQ Motorcycles made me some chocks to lock the wheels. Haven't tried them with the cycle machine yet but he tried push me backwards & the chair remained put.
Hoping to start aided walking this week. The Mrs & family have been marvellous.
Missing our dogs terribly though , especially since one had another fit last night.
I've been given a preliminary discharge date of the end of April. Aiming for sooner
Once again, thanks for the kind words & encouragement.
Things going well for me, strength increasing slowly but steadily apart from arms/shoulders used for wheeling the chair, which are rapidly improving.
Eating well & getting a lot of exercise.
Had a problem with the cycle machine (used from the wheelchair). The solid tyres don't grip on the linoleum floor so the whole chair with me in it constantly slid backwards.
My mate from PDQ Motorcycles made me some chocks to lock the wheels. Haven't tried them with the cycle machine yet but he tried push me backwards & the chair remained put.
Hoping to start aided walking this week. The Mrs & family have been marvellous.
Missing our dogs terribly though , especially since one had another fit last night.
I've been given a preliminary discharge date of the end of April. Aiming for sooner
Once again, thanks for the kind words & encouragement.
ReaderScars said:
Smiler. said:
...Missing our dogs terribly though...
Is a rendez-vous in the hospital car park with the hounds out of the question?If things go well this week, it might be possible next weekend. Something to work for
Update.
Five weeks after the onset of GBS & I'm able to walk small distances with the aid of crutches. Even better news is that the medical team have agreed to let me home for Easter.
Not overnight but I can visit each day for a few hours.
Walking is very hard & not without pain. Well not pain exactly, but with each step, muscles & tendons which have been unused for weeks suddenly stretch & work & combined with the damaged nerves result in a weird sensation.
I'm very unsteady & have to concentrate on the technique to achieve the correct leg & foot action. It's easy to move badly which will actually hamper recovery.
Now I'm standing, none of the staff can belive how tall I actually am (6'7"). It took a week to find the extra long crutches. The physio's tried a variety of walking aids, none of which were big enough.
One thing that has surprised me now I'm able to stand is how wide the wheelchair actually is. It's massive. I think it's designed for people a "lot" bigger than me although I have likened my use of it to a shaved Orangutan in a T-shirt.
In other news, I've received a form from the council for a temporary Blue Badge. It's 20 or so pages long but from the accompanying letter, it seems that I won't be eligible as I'm under 65 & not in receipt of the upper limit of disability living allowance.
I'm self employed so I'm likely eligible for exactly no benefit of any kind (unless I'm unable to work for years or something which may not be the case).
I'm going to collect some electrical components from home over the weekend & attempt to make up a small assembly next week during OT (wire up a relay or something).
My hands are the least progressed limbs as far as rehab goes, I still can't close my fingers together & flatten them out.
Anyway, looking forward to seeing the dogs & spending some time with the Mrs & the family. It's a load off my mind knowing she can relax too this Easter.
This whole thing has been a massive strain on her & she hasn't had people running around after her 24/7.
All in all, very good progress & compared to some of my fellow inmates on the rehab ward, I've really gotten off very very lightly.
And to that end, hope you enjoy whatever you do this weekend
Five weeks after the onset of GBS & I'm able to walk small distances with the aid of crutches. Even better news is that the medical team have agreed to let me home for Easter.
Not overnight but I can visit each day for a few hours.
Walking is very hard & not without pain. Well not pain exactly, but with each step, muscles & tendons which have been unused for weeks suddenly stretch & work & combined with the damaged nerves result in a weird sensation.
I'm very unsteady & have to concentrate on the technique to achieve the correct leg & foot action. It's easy to move badly which will actually hamper recovery.
Now I'm standing, none of the staff can belive how tall I actually am (6'7"). It took a week to find the extra long crutches. The physio's tried a variety of walking aids, none of which were big enough.
One thing that has surprised me now I'm able to stand is how wide the wheelchair actually is. It's massive. I think it's designed for people a "lot" bigger than me although I have likened my use of it to a shaved Orangutan in a T-shirt.
In other news, I've received a form from the council for a temporary Blue Badge. It's 20 or so pages long but from the accompanying letter, it seems that I won't be eligible as I'm under 65 & not in receipt of the upper limit of disability living allowance.
I'm self employed so I'm likely eligible for exactly no benefit of any kind (unless I'm unable to work for years or something which may not be the case).
I'm going to collect some electrical components from home over the weekend & attempt to make up a small assembly next week during OT (wire up a relay or something).
My hands are the least progressed limbs as far as rehab goes, I still can't close my fingers together & flatten them out.
Anyway, looking forward to seeing the dogs & spending some time with the Mrs & the family. It's a load off my mind knowing she can relax too this Easter.
This whole thing has been a massive strain on her & she hasn't had people running around after her 24/7.
All in all, very good progress & compared to some of my fellow inmates on the rehab ward, I've really gotten off very very lightly.
And to that end, hope you enjoy whatever you do this weekend
spyder dryver said:
OP- my wife missed our dogs too. So we hatched a plan to wheel her outside the unit to see them. The nurses rigged up a portable ventilation system and then fitted all the other rigmarole, including heart monitor and various pumps and tubes, to the bed. She couldn't believe it. Neither could the dogs.
We both hope that you make a full recovery.
Have you any idea what may have triggered your GBS?
Geoff, my heart goes out to you & your wife. And thank you for your kind wishes.We both hope that you make a full recovery.
Have you any idea what may have triggered your GBS?
In the weeks following my admittance to hospital, it's become obvious that my early diagnosis has saved me from a whole lot of additional grief.
In fact, I often feel a bit like a charlatan given how sick some of the people on the rehab ward actually are.
The medical team think that the mild viral infection (trots for a day followed by 3 days of diminishing fever-like symptoms) that I enjoyed 10 days before the onset of GBS was the catalyst.
What was weird was that for the 5 days before the first symptoms of GBS, I felt better than I'd felt in years.
Oilchange , how long ago was your mate in hospital?
BlackVanDyke said:
LA can issue blue badges at their discretion. But you qualify automatically if you receive the mentioned benefits. Get it done, it's well worth it!
My wife is going to speak to the LA on Tuesday about this. It would have been nice if the person she spoke to previously mentioned it at the time though.Update:
I was discharged on Friday. Yay
I'm using crutches & everything is s l o w.
I've managed to establish a method for using the original over-bath shower (lots of grip tape).
I even managed to get up onto the exercise bike yesterday but my legs & arms are proper tired. Sometimes my size (height) works in my favour, other times not so much.
Rehab teams are to make contact today & I'm told a visit by the neuro lot is on for this afternoon.
All in all, I have been very very fortunate & am extremely grateful, not least for
My wife has gone back to work today albeit on slightly reduced hours. Today is the first time I've been on my own for any length of time for two months. All tickety-boo so far. Might need to phone the speaking clock later though.
Anyhoo, thanks again for all the info & kind words & emails.
Onwards & upwards!
I was discharged on Friday. Yay
I'm using crutches & everything is s l o w.
I've managed to establish a method for using the original over-bath shower (lots of grip tape).
I even managed to get up onto the exercise bike yesterday but my legs & arms are proper tired. Sometimes my size (height) works in my favour, other times not so much.
Rehab teams are to make contact today & I'm told a visit by the neuro lot is on for this afternoon.
All in all, I have been very very fortunate & am extremely grateful, not least for
- Early diagnosis & treatment
- Excellent nursing & rehab teams
- Remarkable wife
- Family (most), friends & even strangers have been fantastic & very kind
- Wife's employers in being so reasonable
- Nintendo Wii
My wife has gone back to work today albeit on slightly reduced hours. Today is the first time I've been on my own for any length of time for two months. All tickety-boo so far. Might need to phone the speaking clock later though.
Anyhoo, thanks again for all the info & kind words & emails.
Onwards & upwards!
llewop said:
great news
the difficult balance (maybe literally!) will be exercise/activity vs letting body recover/rest
good luck and hope things continue to improve - try not to get impatient with your body not responding how it used to
Spot on. Spent most of yesterday in bed, which is not good really. Not just a physical thing but I just couldn't be arsed with any of it.the difficult balance (maybe literally!) will be exercise/activity vs letting body recover/rest
good luck and hope things continue to improve - try not to get impatient with your body not responding how it used to
I've only had one day like that a couple of weeks ago & it's something I need to avoid.
I did get up when Debs got home & I did cook dinner (chilli). I felt a bit ashamed given that she's now the breadwinner & her job situation is not the best right now.
This morning I got up when she left for work at 07.30 & after breakfast, made a pie for tonight. Took nearly 3 hours. I am rubbish at rolling pastry.
llewop said:
I'm currently on my fortnightly enforced 'rest' day, 1 hour into 4 hours+ of infusion!)
Is that Immunoglobulin? How long have you been under treatment?As for the dogs, it is indeed great to be back with them. They have slipped into some bad habits whilst I was away (well they were never the most obedient anyway).
I have been over the park when Debs walks them but I'm really slow on the crutches so make a line diagonally to the opposite corner & back whilst she takes them around the perimeter so not walking with them.
I am able to play a bit of tuggy with them & when I go for a nap, they are "right" in there
Here's a pic I took the other day
Gassing Station | Health Matters | Top of Page | What's New | My Stuff