Guillian Barre Syndrome

wack61

wack61

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Guillian Barre Syndrome

No I'd never heard of it either

Last bank holiday whilst at Oulton Park I got a phone call from my wife saying she was unwell and going to the out of hours GP

He thought she had a stomach upset and sent her home, no treatment

Monday she felt worse so made an emergency appointment with her GP

He thought it was Gallstones so prescribed drugs and painkillers

These didn't work , over the next week she got worse with more visits to her GP

Last Saturday at midnight she was in agony so we went to A&E, after an hour in triage they admitted her

Over the next week the pain got worse so the painkillers got stronger.

She's almost lost the use of her hands now

Today she was visited by 2 consultant neurosurgeons who have diagnosed her with suspected Guillian Barre Syndrome but they're still not 100% sure that's what it is

Tonight she was moved to Intensive care because if it spreads to her respiratory system she may have to go on a ventilator , plus they're low staffed on the wards at the weekend so they can keep a better eye on her

Having read about it on the Internet I'm terrified and reassured as most make a full recovery but it can take up to a year and she could die from it but that's rare

I don't really know why I'm posting this, I'm not religious at all but if those of you that are could spare a prayer for Lynne I'm sure she'd appreciate it
 
I had heard of it. Says on wiki 80% of patients make a full recovery within a few months.

Has she been anywhere with Deer? Check for tick bites/rashes in case it is lyme disease. This is much more common.

My fingers are crossed for her full recovery :)
 
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Really hope she gets better quickly, Darren.
 
That's horrible news. Kids are resilient little things though, and she's in the best place.

I'm not a praying man but my thoughts are with you and your family.
 
Good luck to you both Darren. Good friend of mine had GB when she was 15. It is true to say it was a long hard road for her but she is really healthy and is 51 now.
 
I know almosy zero about it, but knew someone who had it. Lasted over a year, but a full recovery was made.
 
I'm sorry to hear this...but although her recover may be long, it seems she has been caught early, and with guillian that absolutely key.
I wish her...and you all the best.
 
Best wishes and regards from me china. Pray a speedy and full recovery to your good lady.
 
Sorry to hear about what you wife and of course yourself are going through, but rest assured she is in the right place the best thing you can do is stay positive for her, and i know that's real hard to do sometimes

And you can be sure the great people of TP will be here to offer you support
 
Hi Darren.

First of all, I am really sorry you and your wife are going through this and I hope she makes a speedy recovery.

We all know why you are posting this. It's because you are worried and have so many questions. Post away mate. In these situations it really is good to talk about it.
You both have tough days ahead and there will be times that you really don't know how you will cope. BUT YOU WILL.

I'm guessing, although it is the least of your worries, that you are also wondering how this will affect you financially? You must go to CAB. They will help you.

My situation is very different to yours but it creates many similar problems.

I am a single parent and my daughter has Ohtahara syndrome. A vile disease that claims most children before they reach 2. My daughter is one of the oldest with it and is 13.

It has been tough but you must reach out. Don't shut yourselves away. If you want any help at all you can always email me.

andreasjones@virginmedia.com

Take care of yourselves mate.;)
 
Thanks for all the positive comments

Im very optimistic shes going to be OK but its going to be a long road

shes in a recently built ICU, they spent over 6m on it so its got all the latest equipment

taking to the doctor today it's still only suspected GBS, her symptoms aren't typical

they're treating her as if it is and monitoring her 1/1

the doctor says she could be in there anything between 3 weeks and a year depending on how her body fights it
 
Hi Darren,

Hope your wife makes a speedy recovery. Thinking about you and your family at this time.

Chris :)
 
Really sorry to hear that you and your wife are going through this Darren, it sounds like scary stuff.

I hope that you can take comfort from knowing that she's in the best place she can be, she's being well looked after and that the outlook for a full recovery is strong even if there's a tough road to get there.

Thinking of you both :hug2:
 
How awful I hope she is well soon, take care of yourself too hospital visiting can take it's toll...
 
I really hope they confirm a diagnosis and therefore a treatment plan soon Darren - and that Lynne can get on with getting better asap. I know it's not the same but I have been having cancer treatment since diagnosed last August and I can honestly say the worst part has been where you are now - waiting for a full diagnosis and a plan of action. It is all so unexpected and you feel so out of control - it is horrible isn't it. I'm not going to pretend that a long recovery from illness is a good thing, but once you know what you are dealing with you can at least start to make progress and feel like you are moving forwards. Much love to you and your family - I hope Lynne is home and things improve soon xxx
 
She's still got a sense of humour despite being in a lot of pain

Today she said, if I don't come out of this 2 stone lighter there's no justice in this world
 
wack61 said:
Guillian Barre Syndrome
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Some years back we had a friend who suddenly contracted this - she nearly died as it affected her respiratory system and she was rushed into hospital and put on a ventilator for a while.
She was treated with intravenous immunoglobulin which contains antibodies that have been extracted from donated blood.
For a while her speech remained affected and there was evidence of some lack of muscle coordination, however she made a full recovery and is now doing fine.
 
Merc said:
Hi Darren.

First of all, I am really sorry you and your wife are going through this and I hope she makes a speedy recovery.

We all know why you are posting this. It's because you are worried and have so many questions. Post away mate. In these situations it really is good to talk about it.
You both have tough days ahead and there will be times that you really don't know how you will cope. BUT YOU WILL.

I'm guessing, although it is the least of your worries, that you are also wondering how this will affect you financially? You must go to CAB. They will help you.

My situation is very different to yours but it creates many similar problems.

...

It has been tough but you must reach out. Don't shut yourselves away. If you want any help at all you can always email me.

andreasjones@virginmedia.com

Take care of yourselves mate.;)
Click to expand...

What he said

my sister has had an ME type illness with spasmodic muscle paralysis and temporary loss of limbs etc since she was about 12 - she's now 35. ( i acted as a primary carer when she needed one so my mum could stay at work)

if you need anything at all you can also feel free to email me

bigsoftmoose@googlemail.com
 
Good luck to you both,hope she is well soon

Ian
 
Good luck Darren, I hope she makes a speedy recovery and I'm thinking of you both
 
gramps said:
Some years back we had a friend who suddenly contracted this - she nearly died as it affected her respiratory system and she was rushed into hospital and put on a ventilator for a while.
She was treated with intravenous immunoglobulin which contains antibodies that have been extracted from donated blood.
For a while her speech remained affected and there was evidence of some lack of muscle coordination, however she made a full recovery and is now doing fine.
Click to expand...

That's why she's in intensive care, they're worried she could suddenly deteriorate, if it spreads to her trunk they're talking about induced coma and a ventilator

She's getting the same treatment, it's not a cure as there is no cure but it boosts her immune system to help her fight it off, hopefully

I took he kids up to see her this evening, they're old enough to understand she's very I'll at 13 & 15 but I haven't mentioned she could be put in a coma , hopefully it won't come to that
 
wack61 said:
That's why she's in intensive care, they're worried she could suddenly deteriorate, if it spreads to her trunk they're talking about induced coma and a ventilator

She's getting the same treatment, it's not a cure as there is no cure but it boosts her immune system to help her fight it off, hopefully

I took he kids up to see her this evening, they're old enough to understand she's very I'll at 13 & 15 but I haven't mentioned she could be put in a coma , hopefully it won't come to that
Click to expand...

I hope that everything goes well for her, she is younger than our friend so age will be on her side - she will appreciate the support from you all :)
 
MWHCVT said:
Sorry to hear about what you wife and of course yourself are going through, but rest assured she is in the right place the best thing you can do is stay positive for her, and i know that's real hard to do sometimes

And you can be sure the great people of TP will be here to offer you support
Click to expand...

What he said.

All the best and hope all goes well.... undoubtedly a hard time.. however difficult it may be, make sure you keep yourself fit and well also, as you'll be sod all use if you knacker yourself up... (y)
 
Im sorry to hear your wife in is hospital, i hope she recovers swiftly.

I have a friend with GBS. It first struck her when she was pregnant with her second child (about 16 years ago) she was forced to have a premature emergency c-section for the sake of her life and her daughters. Her daughter was fine, but she was kept in hospital for a number of months afterwards, she did nearly die but the expertise of her main Doctor meant she got the right treatment quickly.
She has never fully recovered, being left with a limp and complete loss of feeling in her fingertips.
She was unfortunately struck by it again about 5 years ago, ended up in hospital again going through the same treatments. She has recovered again (took over a year in total) still has no feeling in her fingertips, walks with a limp and now wears a wig because it has caused alopecia.
She was told after her first bout of it that it had left her infertile, but 15 years later she and her husband conceived, much to thier amazement.

You wouldnt know to look at her that she has suffered so badly twice in her life, apart from her slight limp and her fingertip numbness, she looks the picture of health (no one can tell she wears a wig). She knows that it could strike again but lives life like anyone else does.

If you would like any more first hand information im sure she would be willing for me to ask some questions for you.

Wishing your wife well. xx
 
I'd never heard of this until one of the Liverpool footballers was struck down by it. It took him nearly a year to get back to full fitness but most times it takes a fair bit less than that.

Wishing your wife, and your family, all the very best for a speedy recovery.
 
Thanks for all the kind words

They've just about got the pain medication right now so she's a lot more comfortable

Her legs aren't affected at all at this stage but apart from slight sideways movement her arms are pretty much immobile

They'll be keeping her in ICU for the foreseeable future with constant monitoring of her respiratory system as that's the biggest risk

The thing that worries her most is having to go back on a normal ward

Amazingly on Tuesday some **** tried to sent her home, they didn't know what was wrong with her, she was in agony but because she was able to shuffle a few steps he said she could go home

The staff on that ward were fantastic, very dedicated but run ragged at night, if she got into breathing difficulty it's whether they'd get to her in time so we're going to do all we can to keep her in ICU as long as possible

She's having a lumbar puncture on Wednesday as that'll give them the most chance of identifying exactly what it is because they're still not 100% sure
 
Darren I'm glad to hear she's more comfortable.
LPs are never fun, but they can reveal so much in terms of the CNS.
I can understand her fear of being back on a general ward...I'm sure they keep her in ICU until any possibility of her resperatory system being compromised are gone.
Give her our very best.
And look after yourself...she needs you strong mate.
 
My then 20 year old son had GBS in November 2010. It began with tingling and numbness in his hands and feet but within a few days he had lost the use of his legs and arms. It travelled upwards and affected swallowing, speaking and even eye movements and he too was moved to Intensive Care because of fears that his breathing would be affected. He had intravenous Immunoglobulin treatment but it was decided that he was still not recovering well and he was moved to John Radcliffe and had Plasma Exchange treatment. He began to recover some movement after that and after a short spell in a Rehabilitation Centre learning how to walk and regain movement after such a long period in bed, he was able to return home in February 2011. He returned to work part time and gradually increased back to normal hours within a couple of months. Now he is fully recovered although he does have a small degree of paralysis to one side of his face (hardly noticeable unless you already know about it)

I highly recommend you visit the GBS support website and contact them. They are wonderful and can put you in touch with a local recovered ex-sufferer who will act as a support to you. You can ring the GBS Support Group anytime and speak to someone who has recovered from GBS and they will answer any questions you have.

http://www.gbs.org.uk/

It's a long hard road and sometimes you will lose heart but always remember that she stands every chance of a full recovery. I haven't made enough posts to PM you but if you want to ask me any questions, please do PM me with your email address and I will answer any questions you have.

All the best to you and your wife
 
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Merc said:
It has been tough but you must reach out. Don't shut yourselves away. If you want any help at all you can always email me.

andreasjones@virginmedia.com

Take care of yourselves mate.;)
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Thanks, it's much appreciated

panther_87k said:
If you would like any more first hand information im sure she would be willing for me to ask some questions for you.

Wishing your wife well. xx
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Thanks for the kind wishes, if she starts to deteriorate I may take you up on that offer

big soft moose said:
if you need anything at all you can also feel free to email me

bigsoftmoose@googlemail.com
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Thanks for that


DerekP said:
http://www.gbs.org.uk/
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Thanks for that information Derek, Ill have a look, I'm glad to hear your son made a good recovery.

The doctor said he'd treated a few cases and they'd all had a successful outcome, the only one they nearly lost was a girl of 22 who wouldn't have a tracheotomy because it might leave a scar on her neck

better than being dead though
 
Darren get her referred to the Walton centre in Liverpool mate, trust me its the best place for neuro in the country and luckily relatively close to you.

if it is GBS prepare yourself for the long haul, physically and emotionally its really tough on the patient and their families, but as others have said she will come out the other side and if i remember correctly about 70%-80% make a full recovery, the other 20%- 30% will have some residual problems and only a very small percentage will die from it

hope all goes well for you brother, you will find now just how good your friends and family truly are
 
I'm not sure if I can just get her moved, she's still in intensive care, if they try to put her back on a normal ward I'll ask how I go about it
 
Not sure that trying to move her would be the most sensible thing to do at this stage ... if at all, unless you have a very good reason concerning her care.
 
gramps said:
Not sure that trying to move her would be the most sensible thing to do at this stage ... if at all, unless you have a very good reason concerning her care.
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i base this on 23 years nursing mate including working at said walton centre for neurology and neurosurgery ;)
 
I think she's likely to be kept in intensive care for the foreseeable future, the consultant neurosurgeon is coming to see her tomorrow, hopefully with some results from the lumbar puncture

She had a piece of paper with meningitis written on it which came from the blood test she had earlier in the week so they still don't know what's wrong with her

I don't have any concerns about her treatment where she is now but if they tried to put her back on a ward I'd have words with them, she's very Ill, too I'll to be 1/30 with 2 nurses
 
My son was in ICU for 2 weeks - a bit longer than they wanted because there were no beds available on the wards. When he eventually went onto a ward, my wife refused to leave him for 3 days because he couldn't move a muscle, couldn't speak, couldn't press the help buzzer and had been placed in an alcove out of sight of the nurses station. After that, we took it in turns to stay with him round the clock until he was transferred to John Radcliffe, and it was exhausting but necessary.

They will be looking for raised levels of protein in the cerebrospinal fluid from the lumbar puncture. There is no definitive test for GBS but when everything else has been ruled out, the lumbar puncture can help identify GBS.

I remember you said your wife had lost movement in her hands but has this progressed to anywhere else?
 
It's just the arms, she can still move her fingers but can't lift her arms, her legs and feet are fine, she can't grip anything though , she's in a lot of pain, when the drugs start to wear off she's in agony until they kick in again
 
My son was also in agony. It was weeks before they got the pain meds balanced. Nerve pain doesn't respond to normal painkillers. Gabapentin and Amitryptyline seemed to work well together. He loved the morphine because it killed the pain so well but didn't last long though. He had all sorts - even ketamine.

I'm glad the paralysis hasn't got any worse.

All the best
 
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