New Member – just out of hospital

    • Anonymous
      September 9, 2006 at 5:32 am

      I have just come home after spending 7 weeks in hospital with GBS (Miller Fisher variant). I had rapid onset (ventialted within 48 hrs of 1st symptom) but by all accounts have had a rapid recovery andwas walking within 5 weeks and now walking unaided. I was paralysed almost totally, i was able to move my head and that was about it. I couldnt even open my eyes. I was ventilated for 2 weeks then had a trachy for 3 weeks although i could breathe on my own, removal was delayed by an infection. I spent 4 weeks in ICU, a week in the medical ward then 10 days at my local hospital for rehab.

      I have double vision and limited control of the facial nerves on the right hand side but barely noticable. I am coming to terms with the fatigue that comes with everyday tasks.

      Would love to hear other peoples experiences especially with MF variant, aand would like to get in touch with other GBS survivors in Australia

    • Anonymous
      September 9, 2006 at 7:28 am

      hi montanasmum & welcome,

      bet you couldn’t close your eye lids either if they were in the open position [sick gbs humor]. unfortunately, i’ve been there too. sounds like you are making a remarkable recovery. expect to see greater recovery w time. it is v important to rest lying down when you are tired. take care. be well.

      tony royle NSW 61-2-99681799
      james gerrand VICTORIA 03-9853-6443

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 9, 2006 at 7:28 am

      hi montanasmum & welcome,

      bet you couldn’t close your eye lids either if they were in the open position [sick gbs humor]. unfortunately, i’ve been there too. sounds like you are making a remarkable recovery. expect to see greater recovery w time. it is v important to rest lying down when you are tired. take care. be well.

      tony royle NSW 61-2-9968-1799
      james gerrand VICTORIA 03-9853-6443

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 9, 2006 at 10:46 am

      Hi and welcome to our little world. Feel free to drop in anytime and let us know how you are doing and if you have any questions. While I did not have the MF variant there are those here that have and can help answer those specific questions.

      God Bless
      Stephen

    • Anonymous
      September 9, 2006 at 8:10 pm

      Hi, and welcome. Sounds like you are making a rapid recovery, in GBS terms anyway. As Gene said rest is very important as over doing things cane set you back.
      Read as much as you can, both here and the UK site, It is very good as well.
      Just remember everybody have different symptoms and most that post here are the unfortunate ones with the worst residuals.

      Where abouts in Queensland do you live? I’m in the Gold Coast hinterland.

      Neil

    • Anonymous
      September 9, 2006 at 10:25 pm

      Welcome to the wonderful world of GBS. I, too, had MF variant – in 1993. Like you, I had rapid onset – symptoms started on a Tuesday, admitted to hospital on Wednesday, diagnosed on Friday, in ICU and on vent by Sunday. I was almost completely paralyzed – all I could do was wiggle my toes! My eyes were closed as well. I was on respirator for two months, but despite that my recovery was quick in term of GBS – to where I am now within a year. Don’t be surprised if you have trouble with your eyelids drooping when you get tired – mine still do at times. I live in USA, but wish I could come to Australia to visit with you – maybe someday!

      Please don’t hesitate to ask me any questions. 🙂

    • Anonymous
      September 10, 2006 at 5:32 am

      thanks for the replies, it is good to know there is somewhere i can come to chat with people who know what it iws like to have gone through this.

      Neil, I live in Warwick, moved from Brisbane a year ago so i had my treatment at Toowoomba. Was actually very impressed given that it is still a country town.

    • Anonymous
      September 10, 2006 at 9:24 am

      Hi, despite the problems with our health system, I think even our regional public hospitals provide first class treatment especially to those that are seriously ill.
      I too had a rapid onset, I was diagnosed very soon after arriving at accident & emergency, The young doctor mentioned GBS early but said the progression didn’t really fit as I had no sensory problems and my weakness started with my hands, not my feet. Due to the speed of the onset he decided a spinal tap was warranted any way. 3 hrs later I was in ICU with a drip line in getting the IVIG treatment, another 4 hrs and I was on the vent where I stayed for over 6 months. Then it was on to a general ward for 1 month and 5 more months in the rehab ward. 364 days in all.
      When I left, the head of department organized a morning tea with many of the nurses, wardsmen, cleaners, PT’s, OT’s & others I had contact with over the past year in attendance.
      4 years later I still go to PT & OT at the hospital twice a week, And all this from a free system. I think many on this site would be very jealous of our system.
      My recovery, despite the best efforts of everybody, myself included, has been very very slow and I am still mainly confined to a wheelchair.
      But as you will find, the effects of this syndrome are as varied as the people on this site.
      All the best
      Neil