Tuesday 20th rang 111 has I had lost all feeling in my legs and my face and lips were so numb I couldn't eat or drink. Was admitted aftera bit of a protest as at first As usual we can't fine an thing wrong go home. After 30minutes of tears asking how I could possibly g o home when I can't eat drink and feel my legs they addmitted me. Spent 3days on a ward eating just soup and yogurt as I can't chew anything. Early hours of 24th rushed to intensive care straight away on treatment for Gillian Barre and tube up nose for food and meds drips and I'v's every were. Now back on regular ward on pureed diet and thicking power for all liquids. Meds for syndrome has finished its course. Gained some strength back in arms but problems with legs. Been stuck in bed and finally pshyo tried to get me out of bed couldn't feel the floor under my feet my legs orchestrated to bend so I will need splints to fix the bend and retrain my legs to work. I have a long road ahead of me.
Any help and advice would be great xxx
Written by
Nikki1805
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Omg you poor thing hun! What an absolutely awful time you’re going through. I wish I could offer you some advice but atm I think everything is in the hands of the Drs, physio’s etc. Just try and stay strong and take your time to fully recover. Don’t try and rush through it.
Please take care of yourself and sending you lots of love and gentle hugs too. My thoughts and prayers are with you at this difficult time, but I know you’ll get there in the end lovely xx🤗🤗.
Relative had Guillan Barre years ago, she had a rare variation of it so it wasn't diagnosed correctly for months. It got worse before it got better BUT she did make a full recovery.
Her legs and feet, and head/scalp, became highly sensitive, incredible painful to the lightest touch. Legs then became numb and she had to use a wheelchair for a short time. I can't remember all the treatment she had --- something like her blood plasma being changed ?
Gradually the feeling came back in her legs and feet and she was able to walk and drive again. Physio helped.
It must have been very scary for you, especially the ITU part, all I can offer is learn all you can about the illness. And ask your dr for all the help you need, especially physio.
I also worked with a woman whose first husband had Guillan Barre. Like you, it struck suddenly. He went from walking around on a family day out to being unable to drive home or get out of the car when they got home. Drs were mystified and treatment seemed to be minimal. Once he was home from hospital he started his own physio type exercises as nothing was offered. She said he lost all the muscle in his arms and legs to start with but with exercise got that back. Again, he made a full recovery. He was in his 20s at the time, my relative was in her early 50s.
My friend had this.Her husband thought she'd gone up to bed for rest n found her on the bed.She died 3 times and was put on life support. Has taken her long time to get anywhere normal again.She could only communicate in hospital blinking her eyes.She went to 2 hospitals and was helped intense physio even learning to speak again and walk again.She just walks with stick now. Before this I had never heard of it.
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This is from my earlier blog I've wrote it out now so it should be readable now
Restless leg syndrome 
Diagnosed with Sjogren's syndrome
Fed up and now afraid to go out alone
Best day ever but now in so much pain 
