My sisters story

My sister, Maria (33) had a mild chest 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 world. Addenbrooks Hospital, Cambridge UK.
There she was placed on a ventilator and feeding tube was inserted. She began the IMG 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 neck 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 medication just the feeding tube.
Still paralysed but right arm working better. Left arm. Could 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 very weak. We are on week 11 and still cannot walk. Just began physio and have been told she wont 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.

Prayers & love to your sister, Maria, as well. I hope she makes a full recovery. I only had mild GBS with no paralysis, but I see on this site what so many people go through. She is doing a great service to be part of a study on GBS. I am sure it will help, encourage and guide many people in future. All the best to you, Maria and your family.

I remember so well please read Bob Martin It all takes time and lots of GOOD therapy never give up.Look at ramgbs62123 for my Petition Bob

Thank you I appreciate the well wishes and will pass them into Maria

Thank you I will read it now :slight_smile:
I appreciate your time.

I can begin to imagine your worry and anxiety but it does sound like you have had the best care and your sister is now beginning her slow road to recovery. Sending my thoughts and support to you. This site has been very useful for me and I hope it is for you too.

I had Guillian Barre - most make full recovery - I did, and you will too. It just takes time ... Nebretta!!

The Good Lord will complete her healing in JESUS Name. He did it for me. I was in I C U for about four months and in the hospital for almost a year. My medical situation was not diagnosed for the first three weeks, so you can only imagine how serious it was. I was visiting my country in Africa when it happened and the doctors couldn’t figure it out until a neurologist came in and examined me. And said it’s G B S,but, we will still need to get the test done . I am doing very well today. I do know that your sister will be fine. Stay blessed. My family and I are praying for her.

Thank you so much for your positive thoughts and prayers. God bless

My prayers are with you! I am sorry to hear about your sister. I know it is devastated to see your sister going through all this. Be strong, it takes time, but she'll get better.

Thank you for sharing. My thoughts are with your sister and your family. I am sure she appreciates your visits.

I had the plasma exchange, it was uncomfortable but it was well worth it.

She’ll be ok. It’ll just take awhile. I was given a 1 year diagnosis on being able to walk, and I’m on 6+ months and walking. Not that steadily, but I’m not in the wheelchair. RECOVERY WILL HAPPEN. DON’T LOSE HOPE.

All of my prayers and best wishes for your sister. My brother was also recently diagnosed with this condition. Did the neurologists tell you the causes of GBS?

What you wrote sounds pretty familiar to me - I had GBS in 1988. I made a full recovery - most people do. Blessings to your entire family. Nebretta