"I did notice this summer that when I got off the boat and lay down, I felt like I was still moving. Looking out the window laying down, the tree trunks moved a bit from side to side for about 1/2 hr. I don't know what that means, perhaps some inner ear problem still? (I have low had function of my left auditory nerve for most of my life, since tests in my mid twenties). "

Mrs.D - I've had that problem my whole life too - but ears were ok - when I got off an elevator I felt like I'm hopping up and down inside (if that makes sense) - and since I've worked on the very top floors of several high rises, very irritating) - have less of a problem with boats, feeling lasted only a few minutes if out all day, but even stuff like skating - used to feel like my legs were still moving for a while after... now of course with no propeciation its moot - but I'm wondering if it was a warning of what was to come with a heridiatary PN..... do those of you with CMT or other inherited PN have complete loss of reflexes?

I don't but I'm sure a person could have in time as it progresses and the type that they have. For example; deep tendon reflexes.

I don't know but for me and I have not allowed a doctor to take them lately cause it causes too much pain mine seem to vary. I think it is from being so tense as I can't relax when I know it is going to hurt. I am not saying this is you and who knows with me. It may not be from tension. I am glad your doctor ordered another mri. What about emg/nc does that test again to see progression?I wish I had more ansers for you. Have you ever tried pool therapy or been suggested it? I just suggest that cause I have been thinking of it again and out of all the PT type things I hear the best about the pool. Of course go with your doctor suggestion and your body. Sending thoughts

Hi Daniella - the MRI is for my back only - pain from degenerated disks - started way after the PN - which is body wide and ncs/emg's showed mostly no nerve conduction for many years now (havent had one in two years now - they dont think necessary any more)... and sural nerve confirmed - too much axon degeneration for anything to come back nerve wise - the back pain I'll see what he says about maybe the pool after the MRI - its excruciating and I cant take anything but tylenol for it - gotta find some relief there somewhere.... regular PT has proved usuless - they have tried several time - because it just causes severe PN flares!

I am so sorry abd thank you for your clarification. I understand about the PT and it causing more of a flare up. For me like I stated doing on my own and increasing things is the only thing that has moved me forward and I can tolerate. I have heard good about the pool so have been thinking of buying a noodle and to try. A little nervous. You are in my thoughts and I hope you get some answer and direction asap.