Originally Posted by Susanne C.

They spent about 2 hours on my EMG/NCS at Hopkins, after keeping me under a heat lamp for half an hour- I was freezing. When he found the first ulnar nerve entrapment he went to the other arm and found another. They did do the genetic test for HNPP because of that, but it was negative, so CMT type 2 stood. He seemed to feel there was no point in further testing, and never suggested surgery.
I wondered too if surgery would help, but it flares up and goes away so maybe it isn't like the type where they can release the nerve. Since it is progressive and the nerves are deteriorating it is a different situation. My son was in constant pain before his surgery, with numbness, and did get immediate relief.
I still think height is an aggravating factor in all length dependent neuropathies, and CMT is highly idiosyncratic- everyone seems to be affected differently. It is like the pain component- many people with CMT do not have pain and retain feeling in their feet and legs, but if I have severe SFN with no small nerve fibers I am going to have a lot of pain, whether the cause is CMT, diabetes or something else.