3 years in – strange things happening with my hands?

    • Anonymous
      November 28, 2010 at 7:52 am

      Hello all. I haven’t been on here since about May 2009. But I have a concern and I’m hoping other GBS sufferers can lend their experiences.

      I got GBS in late November 2007, so I’m exactly 3 years into recovery.

      It was the one-off acute version of GBS that I got mild-to-moderate according to my neurologist. I was never on a ventilator. I could walk during the onset, first 2 weeks, but only just and I shuffled my feet and it was a very slow walk.

      After a month I could walk about a mile around a shopping centre, but it was kind of slow and sluggish.

      After 4 months, I could run around and play badminton again and I’d say after a year I’d recovered pretty well, but, there were residual side effects and I was only about 80% recovered as my left hand could not manipulate things properly and my piano playing career had gone as my left hand just did and still does not work properly and there is a lot of visual muscle waste on the hand.

      Now, over the past 3 months I’ve noticed that when I wake in the morning both my hands feel quite numb and the movement is slow. I can feel to touch, but they just feel numb, still and if I quickly try and flex/span my hands, the close them to a fist, it takes me 10 seconds to do 20 repetitions. During the day after an hour or so I can do 20 in just 4 seconds.

      During the day my hands never reach full normal feeling, the numbness and sluggishness remains, only less.

      Also, muscle waste has started to appear more and more on the right hand now. I’m very concerned and confused as to why muscle waste is starting on my right hand. This has been happening for about 3 or 4 months now.

      How can this be when I’m 3 years into my recovery. Why has this strange hand weakness and muscle waste started; especially in the right hand?

      I’ve recently been to see my neurologist and he assures me that everything is ok.

      I’m scared that if things carry on like this that in a year or so I’ll have lost the use of my hands. Is it possible that the weakening and muscle waste can continue until there is nothing left of me?

      Anybody else notice things getting worse 3 years in, when you are supposed to be recovering more and more?

      Thanks you all.

    • Anonymous
      November 29, 2010 at 2:08 am

      I have CIDP and have had it for over ten years, finally got a proper diagnoses earlier this year. I have exactly the same issues with my hands as you described. The weakness, the numbness and of course the tremors are varied throughout the day. I start my morning just as you described, by flexing and making a fist over and over, a little better in the afternoon but by dinner time the weakness begins and along comes the tremors — what fun eating rice can be:)

      I read on this site a couple of weeks ago that wearing gloves at night would help. I have only just started a couple of days ago but found that my hands were less stiff in the morning and in the evening when watching TV they were “more comfortable”. Might be worth a try. Because my diagnoses is so recent I am still trying to discover the best treatment (IViG didn’t work, on to the steroids).

      Hang in there and good luck

    • Anonymous
      November 29, 2010 at 4:06 am

      Is CIDP the chronic version. I thought you needed IVIG on a monthly basis for that. Surely if I had not had IVIG treatment for the past 2 years I’d be dead by now?

    • Anonymous
      November 29, 2010 at 5:45 pm

      I’m not much help on the CIDP portion, but I know with 13 years post-GBS every year I get worse… good ole’ age is getting to me (I’m 53 now). I also was not ventilated and could shuffle like you did or crawl on the floor for 6 months. I recently was seen by a volunteer neuro who said I had pretty severe damage. I always thought that since I wasn’t ventilated that meant I had a ‘mild’ version. I guess not. It seems like every year something either new pops up or my legs are getting number and number (?sp) to where the neuro said I was numb beneath the knee. I’ve not been the best at taking care of myself over the years, but have now gotten better with getting more rest and then some more.

      I often wonder if mine has turned into CIDP but I suppose it hasn’t or I wouldn’t be able to even type this much (even with carpel tunnel). Grateful for what is working on my body. I truly believe the average neuro isn’t familiar with what is happening with GBS residualls but we gotta keep praying that they learn!!!

    • Anonymous
      November 29, 2010 at 6:18 pm

      Sorry to hear that Chrissy. I’m glad you are being as positive as you can be.

      I got told that I got it mild to moderate.

      Does anyone else notice that they are slowly declining?

    • Anonymous
      November 29, 2010 at 9:43 pm

      I’m only two months into this and hope that sometime, I will regain feeling in my hands. My feet are still numb but getting better and my legs are regaining strength. till weak as a kitten with hands tho – I have a devil of a time uring the key in a lock and have learned to put plates on a shelf with two hands after several shattering episodes trying to do it with only one hand:D

      Like Beethoven, I can flex them, but both little fingers and both index fingers are essentially paralyzed, without feeling or the aility to move them. Does it come back or will I have to compensate somehow? They say that exercise does not help much. Also, what do people do for the pain in the hands? I is pretty constant – cold fire, pins and needles, items I try to pick up feel sharp, stabbing pains at random times.

      Are these common symptoms? Good luck to all of you. I marvel at the amazing courage of those who have endured this for years. My first symptom was on September 19, 2010. Spent one week on ivIG in hospital, came home walking with a stumble and hands have gone downhill but seem to have reached a nadir now . .

    • November 30, 2010 at 10:48 pm

      Hello all

      Took-I have had only had this a while and my biggest personal worry is will I get my hands back? Folks here, others I have met have assured me that they can return.

      My handle here means nothing if my hands don’t return. However, there has been some improvement. For example, they have more strength and dexterity. Now instead of the pins and needles I feel the need to rub them madly on anything-the sofa, the cat, my wife…I’m driving her nuts!:) It also feels good now to dig into my fingertips with edges or my strings. Lots of sensation, only one other body part has more:o Hands seem to wanna clench up, I always seem to be opening them.

      All I can say is stretch, stretch, stretch your hands. Any handstretching diagrams you can find are helpful. I learned how when I took hand-drumming lessons.

      I really have no answers, but a lot of hope for us all


    • Anonymous
      December 1, 2010 at 3:24 pm

      I have heard of GBS “turning into” CIDP. The symptoms are similar, though it seems that GBS symptoms are more acute; also GBS is of shorter duration.
      Anything that lasts more than, I believe 2 months, is often reclassified as CIDP. But that really doesn’t explain what is going on with you, Beethoven. You may have a newly developed case of CIDP, which may have nothing to do with your GBS. In any event, I would get a second opinion. If this has been going on for over three months and you are now noting muscle wastage, it is time to see another expert. Do not wait!

      Good luck.


    • Anonymous
      December 2, 2010 at 12:25 am

      It’s been over 1 1/2 years for me now and though I have improved-my hands have gotten worse. Most of my typing is now done w/ two fingers. Even though my cidp has put me into a wheelchair, my hands are currently my biggest problem. I have told my husband I could learn to deal w/ not being able to walk if I could just get rid of all the nerve pain. The intensity changes throughout the day. Though my hands feel numb- I can feel things that I touch and can feel if I am touched. I no longer drop dishes but sometimes my hands shake so bad, I am not able to eat certain foods- or carry my own beverage. (I spill it all over). I use a power chair. My legs from my knees down remain partially numb as well. I have explained some of the nerve pain like this to my family: It’s like I am holding on to an electric fence or stuck a bobby pin in a light socket. It also feels like when you’ve left the dentist and you keep tapping your jaw because it’s partially numb—-but my lower legs will not wake up and my hands are driving me BATTY! Lots of sadness happening now. Probably because I expected to be healed by now. Using hands seems to intensify pain.

    • Anonymous
      December 2, 2010 at 9:05 am

      I am the same age as Chrissy, and like her, I have gotten worse with age. I have carpel tunnel in both hands and apparently that is common with people who had GBS. According to the “experts” GBS does not turn into CIDP. People are either misdiagnosed in the beginning or they have residuals from GBS. The medical community is discovering what most of us know; that GBS residuals from nerve damage are more widespread than previously thought. And it is now pretty much accepted that as we age, the initial nerve damage from GBS becomes more apparent. As to your problem, try wearing the wrist splints for carpal tunnel at night and when doing tasks that require a lot of wrist and hand movement. Sometimes that helps.

    • December 2, 2010 at 8:06 pm

      hey all

      this is a pretty cool video despite the verbosity. the guy sounds friendly enough.

      I hope this helps:)