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Guillain-Barre Syndrome GBS

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Guest

I was struck down by GBS seven months ago. I just collapsed in the street. No warning. I didn't know what was happening. I was scared. Got myself to the doctors straight away where he admitted me to hospital straight away. Just had over a week in hospital (I was lucky) but then as I came home, I was on my own to cope with this condition or should I say inconvenience. That's when the fun started. I had to have carer's come and see to my every need. Also had to have meals on wheels. (Only in my 50's, I found it so degrading). I have always been independant, now I was forced to be looked after. It's like starting all over again. Learning to talk, walk and do things. Almost going back in time when I was a baby. But, here I am back on the computer, talking, walking (very slowly, still with a stick) but getting there. It's almost like I was doing too much at the time, and it's slowed me down. But, now I take each day at a time. Life's so presious.

For anyone out there just starting to get back to normal. Just keep going and never look back.

5 likes, 274 replies

274 Replies

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  • amanda95678
    amanda95678 Guest

    Posted

    I think I should have wrote this here. I'm new to the forum and am SO relieved that there are others that I can discuss this horrible disease with. I was hospitlaized a week after I got a really bad flu. It will be a year at the end of this month.I was off work for 2 months and then continued physical therapy for another 5 months. I can walk unassisted now but I don't think I'll be running soon. Sometimes my brain says I can do something...but my body will not agree. I'm still in pain. I would say it's constant but sometimes it's worse. It feels like someone has my voodoo doll and is sticking pins in the feet. I'm still wobbly when I walk and get extremely fatigued often. My biggest concerns now are getting sick because that always sets me back and trying to find out if the cold weather is causing the additional pain as of late. It's incredibly discouraging to not be past it as this point - so I'm really trying to get back to normal
    • justice99042
      justice99042 amanda95678

      Posted

      sorry to hear amanda a few questions for you??

      1 where do you live just province or state

      2 have you had a flu shot before this happened?

    • amanda95678
      amanda95678 justice99042

      Posted

      I live in Los Angeles California.

      I got the flu shot the year before.

      The year that I got GBS - I had had a very bad strain of flu that lasted a little over a week. I was fine for a couple days after recovery. Then suddenly my feet started to feel number along with my legs. And when they checked the reflexes on my knee - there was zero response.

  • igna17
    igna17 Guest

    Posted

    I was struck by GBS 25 years ago.  I was told by the doctor back then that I would never walk again. However I had a good recovery and I can walk.  I hope my comment can cheer you up, specially those going through recovery.

    I have some weakness in my lower limbs.  Is applying electrical stimulation (NMES) a good idea? does anyone know. Thanks

  • sachin04003
    sachin04003 Guest

    Posted

    Could anyone please tell me does physiotherapy help in recovering from GBS. After having IVIG dose. We are in third week of GBS and treatment have shown some improvement.
    • miroco
      miroco sachin04003

      Posted

      i was diagnosed  with gbs after the lumbar treatment  proteins were very high.

      I also had 2 full mornings of the Iv treatment 3 weeks ago.  feeling better but the night time 

      is tough.  back still weak and acky ,legs are very weak.   scheduled for physical therapist later this month.  tried exercising myself but made 

      my legs much worse and couldnt hardly walk after. so learned my lesson.

      thankful I can still drive , started a week ago.  

      thanks for listening

       

    • gregory78040
      gregory78040 miroco

      Posted

      Hey miroco

      How long have you been out and how long were you hospitalised? Try and stay positive! Working out and staying active will help but you have to take it much slower than before.

    • miroco
      miroco gregory78040

      Posted

      I WAS IN THE HOSPITAL FOR TWO MORNINGS ONLY WHILE I HAD THE

      IVS.  THEY PUT 5 DAYS WORTH INTO 2 DAYS .

       I AM MISSING MY GOLF 

      TRYING TO STAY POSITIVE.  HAD THE KIDS OVER FOR DINNER YESTERDAY, THAT HELPED

      THANKS 

    • gregory78040
      gregory78040 miroco

      Posted

      Holy hell!

      Just one bag of ivig in a day had me messed up! I can't imagine such a large amount!

    • miroco
      miroco gregory78040

      Posted

      MY NUROLOGIST WENT SO FAST WITH EVERYTHING IM PRETTY SURE I WAS IN SHOCK FOR QUITE  A FEW DAYS ,JUST TRUSTING.

      NEVER HEARD OF GBS IN MY LIFE

      THEY WANTED TO WAIT FOR 2 WEEKS BEFORE THE IVS AND SHE SAID NO

      GET HER IN NOW.

       

    • evelyn24211
      evelyn24211 miroco

      Posted

      wow.. HOW ARE YOU DOING NOW ? i WAS DIAGNOSED JULY 16TH. I WAS IN THE HOSPITAL SEVEN DAYS. I HAD IVIG AS WELL BUT THEY GAVE IT TO ME OVER FIVE DAYS... IT MADE ME SICK. I CAN NOT IMAGINE HAVING IT ALL IN TWO DAYS... I WAS IN REHAB FOR TWO WEEKS... I AM USING A WALKER TO WALK NOW, BUT I DO HOBBLE AROUND IN THE HOUSE WITHOUT IT... ONLY MY ARMS AND LEGS WERE EFFCTED.. THEY ARE WEEK.. I AM SO THANKFUL IT WASNT WORSE.. BUT I WILL BE GLAD WHEN IT STOPS !.. I HAVE NERVE PAIN IN MY FINGERS....  
    • justice99042
      justice99042 evelyn24211

      Posted

      lol im on the couch for the last 2 years found out that i was never diagnosed with gbs LOL got same symptoms 1 month after being back to work and doing phyiso after having ivig i believe i relapsed but noone can diagnose me!!!

      im about ready to kill myself 

      the pain /twitcing muscules / fatigue

    • miroco
      miroco evelyn24211

      Posted

      HI 

      DOING GREAT LEGS ARE STILL WEAK, BUT THANKFUL I CAN WALK . 

       STARTED EXERCISING LAST WEEK ( WALKING A MILE A DAY )  

      NOT PLAYING GOLF YET BUT THINKING IN ABOUT 2 WEEKS WILL GIVE THAT A TRY AT A 3 PAR COURSE. I SURE MISS THAT. 

      SO LIKE YOU SO THANKFUL AS YES IT COULD OF BEEN SO MUCH WORSE.

      I DID NOT GET SICK WITH THE IV"S AND WAS NEVER IN THE HOSPITAL OTHER THAN THE 2 MORNINGS FOR THE IV DRIP.

       

    • evelyn24211
      evelyn24211 miroco

      Posted

      WOW  I was in the hospital like I said for 7 days, had a lumbar puncture and an MRI two blood test and was checked every day by the neruologist . One way to see if you have GBS is you will not have reflexes.. You know when the Dr. takes that little hammer and hits your knee or elbow to make your knee or elbow jerk? Well if you have GBS they wont jerk.. SO if there is anyone out there who has not been diagnosed ask your Dr. to try that little test as well. Well I am glad you tolerated the 2 days of your IVIG as my Dt. said there could be some sever side affects. My first few they did really slow and moniterd me when they gave it..  My last one they gave a little faster because they were going to discharge me to rehab.. I also had some Phisical Theripy in the hospital that last day but not much.. I just walked down the hall a little ways and they had me try to go up some steps.. I could not... This is a strange journey we are on thats all I can say..  
    • evelyn24211
      evelyn24211 sachin04003

      Posted

      I am on day 76 of my GBS. When I went to the ER I told the neuroligest I thought I had GBS.. I worked in a hospital for almost 30 yrs. and I knew a nurse that had GBS. He confirmed it. YOur neuro was right to move fast but very strange to give you five days treatment in two days.. Glad you are ok... My legs are weak. I read farther down and I see you are doing better. That is encouraging to me.. I am just a little over two months... I will be glad when the nerve pain in my fingers go away...
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