Guillian Barre Syndrome

I am really sorry to hear. Can understand. But if its of any re-assurance most people do completely recover, although it does take time.

My dad had it few years ago, he was more or less on his feet within weeks (6-8 weeks in think) but had residual weakness in his eye muscles for around 9 months. But absolutely fine now. Docs did also put him on Immunoglobulin IV therapy as well (was in India so the approach may be different here)

Hope it helps. Good luck.
 
Thanks for that

More people with experience of GBS than I thought there'd be , 150 cases a year in the UK which is tiny compared to a population of 60m

Apparently they're doing 5 days on 5 days off with the haemoglobin treatment
 
wack61 said:
Apparently they're doing 5 days on 5 days off with the haemoglobin treatment
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Thats the standard procedure for high dose immunoglobulin therapy, I get an IVIG infusion every 3 weeks because I lack the ability to produce antibodies myself as I have a genetic condition so they replace mine with the ones from the IVIG.
They'll probably of warned you of the risk of side effects etc but I wouldn't worry about it that much to be honest as they still are quite rare even with high doses. As the stuff is bloody expensive (~£35 a gram!) then that should hopefully assure you that their doing whats necessary as there are so many requirements, guidelines etc that have to be met for immunoglobulin use due to its cost and limited supply (as obviously blood/plasma donations are limited).

I hope your wife is feeling o.k, that she recovers from the GBS fine and am wishing you and your family all the best.

Sam
 
Thanks Sam, I do appreciate the information and kind words
 
How is your wife doing today? It's a frightening experience spending time in Intensive Care let alone having the illness to contend with. Highly stressful for you and family as well.

Did the lumbar puncture help confirm the diagnosis of GBS?

We were advised that very gentle massage and flexing of our son's legs, feet, arms and hands would be helpful and he did find it helped to relieve the pain. He didn't get as much physio as we would have liked and so we watched what they did and tried to do the same to keep his feet from dropping. His hands began to form into claw shapes from resting immobile on the bed and so we used to straighten and massage them to help prevent it.

My son felt too ill to want either of the following while he was in ICU but would your wife like to listen to music or a book on an ipod? My wife used to read our son extracts from the newspaper or from a technology magazine to break up the time for him.

All the best
 
Thanks Derek

I went to visit her yesterday afternoon and evening , immediately I noticed there was a huge improvement

She was almost back to normal in herself, her pain was under control , her arms are still immobile but she could move her fingers up and down which she couldn't do on Friday

I'm just hoping we've reached the top of the hill, they still hadn't had the results from the lumbar puncture yesterday but so far it hasn't affected her legs at all which is what's confusing them
 
Darren, our thoughts are with you and for your wife for a speedy recovery, I can't even start to imagine what both of you are going though at the moment. Best wishes.
 
How is she doing Darren?
 
She's had a bit of a setback

The left side of her face developed a weakness like she'd had a stroke
That was 10 days ago, since then its eased slightly but she's still struggling wuth her speech

They say she's been stable long enough so they've put her back on a ward

She still needs constant painkillers , nights is the worst, she can't press the buzzer so has to shout waking everyone else up

Monday it was 15 minutes before anyone came

Her consultant is pleased with her progress as she can twist her wrists now but its going to be a slow process
 
Thanks for the update Darren, and I'm sorry to hear that she suffered that setback.
Send her our best wishes.
 
viv1969 said:
Thanks for the update Darren, and I'm sorry to hear that she suffered that setback.
Send her our best wishes.
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:plusone:

In cases like this it's often a roller-coaster of steps forward and steps backward, however she's in good hands and hopefully will progress well until she is discharged and you are back as a family again :)
 
Darren only just seen this and sending you best wishes and everything from Sunny Suffolk.

As someone who has spent the past 13 years in and out of hospital as parent and husband ( wife with MS and son with rare genetic condition) don't forget to look after yourself as well - your family will need you firing on all cylinders and it is very easy to forget yourself in everything that is going on :thumbs:

Nick
 
Thanks Nick

A dramatic improvement today , as I walked in the ward she lifted her right arm and waved to me

It sounds so trivial when you can do it every day but she's been laying with her arms stationary for 3 weeks

As I was talking to her a student nurse came in to check her blood pressure

She asked what was wrong with her , when Lynne said Guillion Barre syndrome she said really, someone at school got that , she was in hospital for months

I know said Lynne , is she ok now

No she's paralysed and in a wheelchair

I'm sure she said it without thinking but I'm not sure she's picked the right career unless it's NHS policy to encourage suicide in its patients
 
wack61 said:
Thanks Nick

A dramatic improvement today , as I walked in the ward she lifted her right arm and waved to me

It sounds so trivial when you can do it every day but she's been laying with her arms stationary for 3 weeks

As I was talking to her a student nurse came in to check her blood pressure

She asked what was wrong with her , when Lynne said Guillion Barre syndrome she said really, someone at school got that , she was in hospital for months

I know said Lynne , is she ok now

No she's paralysed and in a wheelchair

I'm sure she said it without thinking but I'm not sure she's picked the right career unless it's NHS policy to encourage suicide in its patients
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That's fab news :-). It's not trivial at all, sometimes it's the small steps that are the hardest.

So the student nurse is suffering from foot in mouth syndrome - unfortunately all too common in life. When William had his first bout of brain surgery at 18 months the nurse who checked us in said not to be too worried we will have you walking about in no time after the op, not realising that he couldn't walk!, she was so apologetic when i remarked didn't now you did miracles!!
 
The physiotherapists had her sat in a chair yesterday , she said it felt good to be upright after 4 weeks in bed

There's no doubt its going to be a long haul but she's going in the right direction
 
Great news on the Improvements Darren. Wishing her all the very best.

And you look after yourself too :thumbs:
 
That's great news that it's going in the right direction.
Wishing her all the best :)
 
That's fantastic news!!
 
More good news

She's regained 90% of the use of her arms and hands, her face still has the weakness on the LH side but her speech has improved a lot

She's a very positive person with the determination needed to make a full recovery so I'm optimistic that's where we'll be 12 months from now

The physiotherapist I saw today was very pleased with the session they'd just had but she's been laying in bed for 6 weeks so it's going to take a while

I'm certainly a lot more upbeat than I was 6 weeks ago

There's only one problem I can see when she comes home, I know how to work the washing machine and iron now:D
 
wack61 said:
More good news

She's regained 90% of the use of her arms and hands, her face still has the weakness on the LH side but her speech has improved a lot

She's a very positive person with the determination needed to make a full recovery so I'm optimistic that's where we'll be 12 months from now

The physiotherapist I saw today was very pleased with the session they'd just had but she's been laying in bed for 6 weeks so it's going to take a while

I'm certainly a lot more upbeat than I was 6 weeks ago

There's only one problem I can see when she comes home, I know how to work the washing machine and iron now:D
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That is great news. Hope the recovery carries on.
Just say you have employed one of the washing and ironing companies. Or better still just buy some new clothes and say when it was dirty you through them away.
 
:clap: Fantastic news . . .

. . . a man who washes and irons :D




We won't let that overshadow the even better news on your wife's progress though. ;)
Genuinely really pleased to hear it Darren and I hope that she's back home with you soon.
There may still be some way to go, but I've no doubt that you'll get through it together.
 
Things have changed a bit in the last couple of months so I thought I'd post an update

Lynne is on the long road to recovery, she's regained the use of her legs through a lot of determination and effort, a month ago she couldn't walk around a supermarket for more than 10 minutes, today we've been out for two hours

She's exhausted now but it shows how much progress she's made

We've had one slight setback, she hates her glasses so we went to get her eyes tested and ended up back in the NHS system because the optician saw something she wasn't happy with

She's got another MRI scan next week but her eyes are responding to treatment well

The upside is she's lost 2 1/2 stone in weight and is feeling better in herself but it's costing me a fortune in new clothes

It's not often she'll let me take her picture but I snuck this one in

20130914_131528.jpg
 
Glad to hear she is on the mend, a slow gradual recovery is often better than a quick one, the body needs to take its time. hope the recovery continues well :)
 
Delighted to read such positive progress. Hugs to you and your lovely wife.
 
Great to hear the good news :)
 
Darren, that's Great news, Lynne's certainly looking well.

Here's hoping for continued improvements, but sounds like she's making great progress, especially in the past month.

All the Best! :thumbs:
 
Good to see things are looking up for the both of you Darren:thumbs:
 
That's really great news.
I know it's a long road to a full recovery, but she's doing so well.
All the best to the both of you.
 
Suzanne said:
Hugs to you and your lovely wife.
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You're very right, she is lovely,

as a family we've been through a lot since easter, it's been a bad summer but we're looking forward to a better 2014

Thanks for all the kind words
 
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Hope your wife has a speedy recovery.
It's proper life adjusting scary when you loved once have something serious amiss, wishing you all the best.
 
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