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
My wife was said to be suffering with this horrible condition, it started before Christmas and steadily got worse and worse, to the point where she couldn't sleep very well as the pain from her joints was waking her up.
She had a nasty virus and the GP thought that the arthritis was reactive and not to worry as it would go in 6 weeks
She looked like an old lady (she is not yet 40) shuffling around unable to take lids off jars or cut hard cheese...
She got a referral to the hospital but it would take 8 weeks, we threw some money at it and went private as the pain was so bad, it turned out she has rheumatoid arthritis!
A steroid injection got rid of 95% of the pain and she is now taking methotrexate and naproxen. This means that she has to have 2weekly blood tests as those drugs can damage the liver...She now cannot drink alcohol for the same reasons
I feel for you as I can see how painful it is, there is a lot of info out the and apparently a change in diet can really help, we are quite new to all this but I would get a specialist to do a check as other issues did crop up from the blood tests and the steroids really did the trick but they are only a short term solution
I hope you can get some relief,
All the best,
Jim
She had a nasty virus and the GP thought that the arthritis was reactive and not to worry as it would go in 6 weeks
She looked like an old lady (she is not yet 40) shuffling around unable to take lids off jars or cut hard cheese...
She got a referral to the hospital but it would take 8 weeks, we threw some money at it and went private as the pain was so bad, it turned out she has rheumatoid arthritis!
A steroid injection got rid of 95% of the pain and she is now taking methotrexate and naproxen. This means that she has to have 2weekly blood tests as those drugs can damage the liver...She now cannot drink alcohol for the same reasons
I feel for you as I can see how painful it is, there is a lot of info out the and apparently a change in diet can really help, we are quite new to all this but I would get a specialist to do a check as other issues did crop up from the blood tests and the steroids really did the trick but they are only a short term solution
I hope you can get some relief,
All the best,
Jim
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.
OP - Glad to hear you've at least got a diagnosis. That's an important part of your management of the suffering. Sorry to hear of the onset, it sounds awful. I had to wait 6 months for mine before they eventually agreed it was Rheumatoid Arthritis, and that was only through a process of elimination. I was 35 years old and very fit at the time. It knocked me off my feet and took 2.5 years to get to some point of stablising.
Tell your missus to hound her consultant to get her on this drug or the equivalent for her. Don't mess about with Sulfasalazine/Gold. Get her on the biological drugs! She will have to pass some criteria to get on them though (how long she's suffered, pain scales etc.)
retreat said:
My wife was said to be suffering with this horrible condition, it started before Christmas and steadily got worse and worse, to the point where she couldn't sleep very well as the pain from her joints was waking her up.
She had a nasty virus and the GP thought that the arthritis was reactive and not to worry as it would go in 6 weeks
She looked like an old lady (she is not yet 40) shuffling around unable to take lids off jars or cut hard cheese...
She got a referral to the hospital but it would take 8 weeks, we threw some money at it and went private as the pain was so bad, it turned out she has rheumatoid arthritis!
A steroid injection got rid of 95% of the pain and she is now taking methotrexate and naproxen. This means that she has to have 2weekly blood tests as those drugs can damage the liver...She now cannot drink alcohol for the same reasons
I feel for you as I can see how painful it is, there is a lot of info out the and apparently a change in diet can really help, we are quite new to all this but I would get a specialist to do a check as other issues did crop up from the blood tests and the steroids really did the trick but they are only a short term solution
I hope you can get some relief,
All the best,
Jim
Hopefully your wife will find some drug to work for her. In 2008 I managed to get on Etanercept (Enbrel) and from the first injection I've had little pain since then. I've managed to get back to work full time and do things I thought I'd never be able to do.She had a nasty virus and the GP thought that the arthritis was reactive and not to worry as it would go in 6 weeks
She looked like an old lady (she is not yet 40) shuffling around unable to take lids off jars or cut hard cheese...
She got a referral to the hospital but it would take 8 weeks, we threw some money at it and went private as the pain was so bad, it turned out she has rheumatoid arthritis!
A steroid injection got rid of 95% of the pain and she is now taking methotrexate and naproxen. This means that she has to have 2weekly blood tests as those drugs can damage the liver...She now cannot drink alcohol for the same reasons
I feel for you as I can see how painful it is, there is a lot of info out the and apparently a change in diet can really help, we are quite new to all this but I would get a specialist to do a check as other issues did crop up from the blood tests and the steroids really did the trick but they are only a short term solution
I hope you can get some relief,
All the best,
Jim
Tell your missus to hound her consultant to get her on this drug or the equivalent for her. Don't mess about with Sulfasalazine/Gold. Get her on the biological drugs! She will have to pass some criteria to get on them though (how long she's suffered, pain scales etc.)
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.
Fastchas said:
OP - Glad to hear you've at least got a diagnosis. That's an important part of your management of the suffering.
At least once you've got a name for it you can start to understand it. As you've also said, early/quick diagnosis is a help, getting treatment started etc.
Rare diseases are a sod, I was also lucky to get a relatively quick diagnosis for mine (quick in this context being a bit over a year!), which hopefully means treatment will keep it at bay for as long as possible.
Good luck with the treatment and stay positive!
Hope you get better - I've seen what this nasty disease/infection can do.
My 1yr old niece contracted it and in the space of 4hrs of first noticing a difference, was paralysed from the waist down.
She was lucky as we caught it early and she was young, but have seen older people suffer. It sounds like you were diagnosed early which will definitely help you.
My niece was placed in a coma and had several painful injections into her spine to reduce the inflammation and infection.
She's now 4yrs old and hasn't experienced any real side affects luckily, so hang in there - it's not always bad news!
Would be very interested in hearing your story and wish you a speedy recovery!
P.s. quite a few recognised cases, such as Franklin Roosevelt.
My 1yr old niece contracted it and in the space of 4hrs of first noticing a difference, was paralysed from the waist down.
She was lucky as we caught it early and she was young, but have seen older people suffer. It sounds like you were diagnosed early which will definitely help you.
My niece was placed in a coma and had several painful injections into her spine to reduce the inflammation and infection.
She's now 4yrs old and hasn't experienced any real side affects luckily, so hang in there - it's not always bad news!
Would be very interested in hearing your story and wish you a speedy recovery!
P.s. quite a few recognised cases, such as Franklin Roosevelt.
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.
Smiler. said:
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.
Yes, Morten Weighorst. 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 CelticI was physio at his previous club and we remained mates and kept in touch over the years. Like I say, he did make a full recovery so good luck.
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.
Smiler. said:
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.
Good to hear mate, keep spirits and humour high! 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.
One day you'll look back on this experience and realise how lucky you were and how much you appreciate life/freedom.
Don't push too hard on the rehab, take it nice and easy and you'll be back to full health in no time
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