1. Community
  2. Brain and nerves
  3. Neurological Disorders

Guillain-Barre Syndrome GBS

Posted , 62 users are following.

Guest
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

Prev Next
  • mir1
    mir1

    Posted

    Hi All,

    I was diagnosed with GBS when my baby was delivered by emergency caesarean section. The name GBS still gives me the shivers as I think how cruel it is. I lost power in my legs back in July 2011 and within 24 hours it spread all over, resulting in complete loss of my limbs and I had to be tubed for 8 weeks in ICU and 4 weeks in ward. I was then most to rehabilitation for 12 weeks. I got great medical treatment including intensive Physio in rehab centre. The positive side is that I've made a pretty full recovery. My foot drop which not every patient who is diagnosed with GBS gets, has been the main obstacle, as it made learning to walk extremely challenging. I get tingly feeling in my hands and fingers get tired if using iPad for a number of hours. My consultant puts ths down to fatigue. While fatigue was pretty bad 8 months prior to now, it has pretty much gone. I'm just delighted to have recovered as much as I have, and whilst time has gone fast, it also feels like the longest time ever to get to this stage. Looking forward to the day I can wear my heels and am keen to return to the workforce to help in supporting my partner and little girl (whose nearly 2). Great support from family and friends was a major factor in keeping me from getting depressed (although I did have my off days).

    Interesting to read other peoples stories

  • gregory78040
    gregory78040 Guest

    Posted

    Has anyone managed a full recovery?
    • Tarhealing
      Tarhealing gregory78040

      Posted

      I'm doing pretty good now. Had a relapse back in February after a sinus infection. I'm a year and a couple months out from a mild case though it didn't seem so mild. I'm recently running again. Having to rebuild back but it's going well. I was released from PT today because it's gone so well. I'm so thankful!
    • amanda95678
      amanda95678 gregory78040

      Posted

      HI there. I'm almost a year out of being hospitalzed and then was off work for 2 months. I'm still struggling. I still don't have sensation back in my feet - and have jokingly convnced myself that somewhere someone has a voodoo doll with pins in the feet. I'm walking unassisted - but sometimes I can admit that it looks like I might be drunk (unfortunately)

      I was wondering if anyone has noticed whether they are affected by the cold - or rather - by cold weather? We're just entering the colder months and I'm a little worried as I've had more pain as of late. I just can't tell if the pain is caused by running around on the holidays or if it's cold. Or if it's both?

    • gregory78040
      gregory78040 amanda95678

      Posted

      I have found that I have pain after moving around a lot. This doesn't seem related to the weather for me. Compression socks help some.
    • becca68393
      becca68393 Tarhealing

      Posted

      How long did you have to wait before you were able to start running again.  I have been out of rehab for 7 months and doing pretty good except that my feet feel like they are asleep all the time.  They hurt so much at night, I sleep in my shoes every night.  I started walking then running a little, hoping this would help, but the dr. said I shouldn't run right night, it aggravates the nerves more.  I had a severe case of GBS, so I am doing great considering where I was except for my feet.  One other question, did you take gabapentin or something else.
    • Tarhealing
      Tarhealing becca68393

      Posted

      I tried Gabapentin but didn't like the side effects. I started out walking in a pool and riding a recumbent stationary bike after about 4 months. Then began jogging a little. It may have been too soon because I would have good days then relapse after overdoing it. I had such a hard time figuring out what was too much until I had overdone it. I just kept trying though. I had a reflare of symptoms after about 7 months after a sinus infection then had to back off again. After several more months, I was able to start jogging again. I can do 3 miles now but if I go more, my feet fall asleep too so I don't push it. Elliptical will do it to me to after a while too. I try to mix up my activity more now. But I did have what was believed to be a milder case so that may be why I am able to do so much after a year and a half. I can feel the nerves twitching & buzzing like crazy at night after I run or stand all day at work but it gets better with rest. Sometimes twinges of pain but most of my pain is gone and I am no longer on any medication. It may take you longer since you had a tougher case. When did the doctor recommend starting back?
    • becca68393
      becca68393 Tarhealing

      Posted

      Thank you for the information, I will try the bike for a while and try to stay off my feet so much.  My PT said do what I feel like, to try running on treadmill first.  My neurologist wants me to be tested for CIDP saying I may have that.  How is this possible, I had severe case of GBS, they can't fix this so now I may have CIDP.  Are there any doctors that really know anything about this disease?
    • Tarhealing
      Tarhealing becca68393

      Posted

      I have met a couple of people online with CIDP. When I had a reflare, I thought I may have it but I did not. Make sure if you try the bike that it's the recumbent bike. It's easier on you and stretches out your legs and back. You could try the treadmill again but I would not do much. There are doctors that know about this depending on where you are located. Message me and I'll give you some info!
  • justice99042
    justice99042 Guest

    Posted

    what was your symptoms?

    heres mine i posted in hear already

    https://patient.info/forums/discuss/h1n1-gbs-cfs-cdip-help-need-diagnoses-480872

     

    • gbardal
      gbardal justice99042

      Posted

      Hi,

      Have you been to see a neurologist? My GP called the hospital and explained my symptoms (numbness in hands, redused sensation in feet, no reflexes, redused vision etc) to a neurologist. I was sent straight to the A&E. The neurography test showed some slowness in response. Exept from this, I'm pretty sure that they diagnosed me based on symptoms. They did all sorts of tests to make sure it was nothing else that could cause the condition. Then followed 5 days with IVIg treatment. Feeling fab, compared to before treatment, but have some training to do now.

      I was diagnosed with virus on the balance nerve first (I was feeling drunk, so it mached quite well exept from the loss of feeling) and then an ear infection (think the doc wanted to get rid of me).

      Good luck!

    • justice99042
      justice99042 gbardal

      Posted

      yes i did at the first said u got gbs gave me ivig went back to work off month later same symptoms went in my doc said i was never diagnosed with gbs LOL@me oh and i was going to phyiso for it too
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.