Numbness related to strength

    • March 15, 2017 at 1:49 pm

      Just wondering whether it’s common to experience limb numbness. I’ve had several incidents where my leg has “fallen asleep” without knowing it. Of course I realize it once I try to move affected limb. Last summer I had a bad fall because I hadn’t realized my leg was asleep and it could’t hold my weight. Both times I’ve had this happen, the limb “woke up” in the typical time and way it normally would.

    • March 15, 2017 at 1:52 pm

      In my limited experience, yes it is

    • March 15, 2017 at 3:45 pm

      There are many things that are still a bit of a mystery about CIDP. Exactly why it affects some people so differently is one of them.

      I once had a “supporter” that came to visit me in the SNF and offer some encouraging views of my recovery. He had GBS and came away from his experience with some residuals. He told me my symptoms were not that of GBS so I must have something else. We argued about what illness I really had because his disease progress experience was so different from mine. At the time, I didn’t have as much knowledge about CIDP as I do today (thanks to all here in this forum) and just felt discouraged. It took awhile for my optimism to return.

      Each of us experiences symptoms differently. Numbness in the limbs is very typical. Numbness that comes and goes and appendages that seem to “wake up” all of a sudden are not uncommon. Our doctors can only speculate as to what may be behind this. I think it’s the body trying to do repairs.

      Myelin damage is usually the culprit behind our numbness. When the damage isn’t as severe (no axonal damage) some nerve signals may still be able to get through from time to time. This could be a positive sign that the myelin sheath is being rebuilt. Perhaps it’s the reason your numbness comes and goes?

    • jk
      March 15, 2017 at 6:16 pm

      There is a different condition previously called ‘tulip-bulb digger’s palsy’ or ‘potato-grubbing palsy. The idea was that if you spent too much time on bent knee you might get numbness and even foot drop. It’s the reason for some of us to have the PM-22 gene deletion genetic tests.

      How is this relevant? Be aware that if you have myelin sheath damage to your sensory nerves, therefore, the nerve bundle may be sensitive to pressure damage. Consider your limbs’ position prior to the numbness. In my case both of my arms are particularly sensitive to lower arm numbness at night when I’m asleep and I cross both arms across my chest.

      When I’m driving with either arm on the car door or between the seat arm rests for a long period of time is also problematic for me. The peroneal nerve bundle is at risk at the point where you cross your legs.

      Observe your episodes and see if you get relief from avoiding pressure points.

    • March 16, 2017 at 11:29 am

      WOW JK!

      You are so right on, almost!!! I was tested specifically for compression palsies as I initially presented with foot drop and then the brachial neuritis. I believe they do genetic tests for this condition which I had several, unfortunately all negative. Nonetheless, I bet your right. The first time I was sitting and reading and could easily have been resting on my legs. Second was in the “water closet” if you get my meaning lol.

    • March 16, 2017 at 1:35 pm


      What a shame you had to go through misery from that fellow that insisted his way was the only way. I’m sure all illnesses presents differently for each person. I had corneal edema alternating eyes last summer and two UCI docs couldn’t figure out what was causing it until they did a biopsy. That’s because it was an atypical presentation but it still doesn’t change a diagnosis. I think what you said sounds very true. Believe I have slow progressive where right now my nerves have been able to keep ahead of the destruction because that’s slow enough. How have you been lately?