What causes the lack of balance

    • Anonymous
      October 11, 2006 at 1:12 pm

      In CIDP patients. My balance is terrible, even when I am stronger. What is the cause of this? Weakness in general or the demyleination of the nerves? Scarring on the CNS?

    • Anonymous
      October 11, 2006 at 5:06 pm

      One possible cause is demyelination or axonal damage to nerves that provide proprioception — feedback that gives us our sense of where our extremeties are and what they are doing. This will affect your dexterity and may affect you balance, and may not be associated with any sensory symptoms like tingling or numbness.

      A small amount of sensory loss in the feet and ankles can definitely affect your balance as well.

      De-conditioning is another problem that could contribute to balance problems. If you were using a wheelchair, or simply not walking upright unaided much for an extended stretch, you will have to get all sorts of muscles back into play, not just the obvious ones in the legs but also glutes, abdominals, and so on.

      Have you asked a physiotherapist about this? There may be some things that are specific to your situation.

    • Anonymous
      October 11, 2006 at 6:11 pm


      I agree with what Keith said. I also have balance problems (I had GBS). My physical therapist has given me some exercises that are helping. As Keith said, the cause may be specific to your case. Basically, she says that I need to re-train mybrain to help recover from this issue.

      Best wishes,


    • Anonymous
      October 13, 2006 at 1:56 pm

      Thanks for the information guys. If I had to guess Id go with the axonal damage, as I have done exercises trying to strengthen my balance for months now to no avail. I cannot raise one leg off the ground for 2 seconds without losing balance.

    • Anonymous
      October 13, 2006 at 2:31 pm

      Hi John ~ have you tried ‘water walking’? I spent weeks walking back and forth across the pool at the YMCA. I personally had great success with it. Then I went on to yoga practice to help maintain.

      Of course, with each of us, it depends on which nerves are damaged and how much repair happens. And beings that this is a ‘long-term’ recovery, well, it’s anyone’s guess what each one of us will gain back.

      I wish for you success in regaining your balance ๐Ÿ™‚

    • Anonymous
      October 13, 2006 at 8:10 pm

      I have the same problem. Sometimes it’s no problem, sometimes quite bad. Don’t know why. My tilt table test has been negative twice in six months. We haven’t tried any medications for it.

      Exercise usually makes it worse, but not always.

      Can I get a new axonal nerve? ๐Ÿ™‚

    • Anonymous
      October 13, 2006 at 8:35 pm

      Thanks for the responses everyone ๐Ÿ™‚

      Zip, what exactly is a tilt table test?

    • Anonymous
      October 14, 2006 at 11:30 am

      My son 8 yet diagnosed with anything has terrible balance problems and I knkow its his ankles and feet where the problem lies. Someone mentioned exercises to help with balance, can someone tell me what they are so I can do them with my son and see if it helps.


    • Anonymous
      October 14, 2006 at 2:12 pm

      What a wonderful question! I’ve noticed a big decrease in my balance since GBS. I keep working on improving. Puting socks on while standing on the other leg, walking on the curbs instead of the ground (okay, there is still some kid in the old crone) and anything else I can think of at the time. Sometimes I’m very good, somethimes I’m not. Sigh. It could be so much worse, I’m so thankful for what I have.

    • Anonymous
      October 14, 2006 at 2:46 pm


      My physical therapist has me using a large exercise ball (appropriate size is based on your height and weight). I sit on the ball, then straighten one leg so it is parallel with the ground, and hold that position for a count of 10. Then do the other leg. This sounds easy, and probably is, but for someone with poor balance it’s hard.

      Also, she has me stand at the kitchen counter and stand on one foot, let go of the counter and hold the position for 30 seconds. The countertop is there in case I lose my balance, so I won’t fall. She has me alternate feet with this.

      The other thing is to take a large, firm pillow, put it on the floor, and stand on it. Then raise one foot and stand on the other foot for 30 seconds, alternating feet.

      The PT tells me that regaining balance skills is somewhat a matter of retraining your brain and muscles.

      Hope this helps your son.


    • Anonymous
      October 15, 2006 at 2:12 pm

      [QUOTE=JohnC]Thanks for the responses everyone ๐Ÿ™‚

      Zip, what exactly is a tilt table test?[/QUOTE]

      A tilt test is an autonomic test which checks postural hypotenstion.


    • Anonymous
      October 16, 2006 at 1:02 pm

      thanks for the suggestions, we see his physio therapist today and I will see what size of ball. I do all his physio as they kind of gave up on him a year ago but we presisted and hes improving every day!!!!:D


    • Anonymous
      October 23, 2006 at 12:19 am

      John, I sent you a PM.

      Balance is such a mean thing. The longer I deal with the lack of ability to control my balance, the meaner I think it is.

      My feet are numb. I can’t feel my toes. You do a lot of fine adjustments with your toes. As my calf muscles get weaker, it is getting harder to hold myself up using calf and shin muscles, I guess AFO’s will be soon in my future.

      Good fitting shoes are absolutely important. Patience and a sense of humor helps.

      Take care

    • Anonymous
      November 2, 2006 at 4:19 pm

      I’m so glad you asked this question because I have been having the same problems. I’ve was diagnosed with CIDP for about three years ago. I asked my neurologist about it and he could only confirm that it was common in CIDP patients.

      I think the lack of balance is not due to any equilibrium problems but in the feet’s inability to compensate for changes in position rapidly enough to maintain good balance. I think this because I am still able to bicycle without falling and there are few activities that depend on balance more.

      Unfortunately this means walking remains difficult. Here is what I always remember:

      Stay close to objects that can support your weight if you start to tumble (walls, railings, heavy furniture, a good friend, etc.)

      Always turn the lights on when you walk into a dark room. The contribution of visual cues can reinforce your balance.

      By all means use extra caution in situations where a fall could cause serious problems: on a precipice, at a crosswalk, etc.

      Avoid or at least use extra caution around rough, uneven surfaces: gravel, debris, etc.

      Wear lightweight shoes with soft soles. Lightness can help compensate for weakness and soft soles allow your feet to adjust more quickly due to the greater force you can apply.

      This is all common sense, but being aware of your weakness and taking precautions can prevent serious injury.

    • Anonymous
      November 3, 2006 at 10:17 am

      When the nerves are damaged, they cannot send messages to your muscles to work properly, so no matter how hard you try to exercise the muscles they will not work until there is the healing of the nerves.

      Some patients also have drop foot, here is where AFO’S(which are braces) will help the feet keep their proper way of lifting and walking.

      Balance is a major thing with GBS/CIDP people. My husband used to waddle side to side when walking and he also after 6 years still had the balance problem. He also still was falling after 6 years of this crappy illness.

    • Anonymous
      November 4, 2006 at 4:12 pm

      I finally broke down and started carrying my cane all the time. This way, it helps me to keep my balance. I had a bad fall last week and bruised up my arm and hit my head so I got a little bit of a black eye and my head has a big skinned up spot and so does my hand. And it hurt. So I decided right then and there, I was carrying my cane with me to try to avoid anything like that again. There are some really neat ones out there. THe one I have can fold up so if I wont to fold and put in my purse or soemthing I can.