Guillain-Barre Syndrome

[Valk]

I wanted to thank the people who responded to my cry of help in December. My Mum became very weak in a matter of a couple of weeks in December 08 to the point of being paralyzed and we didn't know what to do. We got some advise regarding her medication and got her GP to check it out. We were told her body was shutting down and this was the end of the road..... No No No not yet was our reply, so we took it into our own hands to stop all Mum's med's, we syringed Ensure liquid into her mouth every time her eye's opend and paid for a physio to come in and move her limbs as she was starting to look like a Jelly Fish. Me and my sisters worked 24hrs for 4 months with constantly moving her, sitting her up at all hours of the day and night, shaking her when her breathing stopped and today my Mum is now more aware of her surroundings, she is walking ,reading having eye contact and even a sense of humour. We got a specialist to see her when after 2 months she started to pick her head up and they did tests and they came to the conclusion Mum had Guillain-Barre Syndrome. I just want people to know that GP's are not alway's right and go with your own instincts.

Regards

Happy Valk

 

[Bookworm]

I wasn't a member when this was all playing out - but it is really good to hear your news. Everyone needs a family like you, otherwise we'd be sunk.

 

[Tender Face]

Dear Valk – first of all well done! So agree with you about going with instincts – this time last year some docs were proving earlier others wrong that my mum didn’t ‘just have a viral infection’ as was first suggested ... what a battle for her not to be ‘written off’ without trying!!!! I’m afraid it will always be a soapbox favourite of mine that just because someone has dementia precludes them from anything else!

I am not sure I am as brave as you to go against medical advice .... but certainly to shout and scream and badger for a proper diagnosis ..... to the tenth opinion if necessary .....

As a GBS sufferer some years ago I know how terrifying the sudden paralysis can be ... and I was in my thirties and able to articulate quite well what was going on (or rather not going on) to secure an emergency admission to hospital and access to leading neurologists. And yes, long-term physio (much as it hurt!) was the only recovery route. It's quite remarkable to have achieved this diagnosis at all.

Thank you for updating. An excellent reminder that not all symptoms and presentations can be put down to ‘the next stage’ ...

Love, Karen, x

 

[zoet]

Thats excellent news Valk and well done to you and your family, you should be very proud. It takes alot of courage to go against doctors advice and go with your instincts, and sadly it doesnt always pay off. But in this case you were right and your reward is your mums recovery. Time and again Ive heard of cases where downright LOVE has been the only answer. Your mum is lucky to have you.