My suster, Maria (33) had a mild cgest infection then after afew weeks had tingling and numbness in her hands and tongue. She went to sleep totally functional and fine. The she woke the next morning, tried to get up and collapsed on the floor. This is the beginninh of ghe nightmare.
She was taken to hospital and took over 24 hours to be diagnosed after a spinal tap.
She could not swallow and had go use a suction device to take the saliva out her mouth. She now could not use her arms or legs, now her breathing was sufferring. She was referred to the best hosiptal in Europe, third best in the workd. Addenbrooks Hospital, Cambridge UK.
There she was placed on a ventilator and feeding tube was inserted. She began the IMVG for 5 days and was pretty zonked throughout. Her eyelids were heavy, couldnt talk as she had a tube for breathing fown her throat. A little use of her right arm and that was all. Total paralysis. It broke my heart to watch my sister this way.
After 3 weeks she was taken out of NCC to HDU. Here she began plasma exchange which was a hole in her nevk where they clean the blood and put it back. She said this was uncomfortable and was nausious after.
2 weeks later her face was still not normal and eyelids still heavy and mouth droopy, could not close her mouth fully. Still on feeding tube.
Then she was transferred to Harlow as they needed the beds and she was no longer on meduaction just the feeding tube.
Still paralysed but right arm working better. Left arm. Ould be raised but hamd movements very weak.
She is now in rehab with no feeding tube and can now chew soft food. Her right arm is fully functioning but left hand still gery weak. We are on week 9 and still cannot walk. Just began physio and have been told she womt likely be walkimg by her discharge date of 18th June.
I hope i write again saying she has made a full recovery.
She needs support and have told her these forums are very helpful and ther are very supportive people on here.
Prayers and love to you all. maria is also part of a study into GBS and has offered her notes and developments to help future patients to the heartless syndrome.
Good luck to you all, be strong.