Episodic CMT - HNPP

[Guest guest]

Greetings:

In regard to " episodes " of CMT, you might want to ask your neurologist

if you may have HNPP (hereditary neuropathy pressure palsies? - forgot exact

term). I mention this because I have heard that HNPP is very similar to CMT

(genetic opposite but similar symptoms), but tends to be more episodic in nature

and possibly less progressive...(I could be wrong on that). The PP part does

refer to " pressure palsies " and I have understood these as " episodes " that may

occur due to pressure/excessive use and also may dissipate or heal after a time.

From most of what I've heard about CMT over the years, people tend to

have good days and bad days but I have rarely heard it described as having

discrete " episodes " - more like a slow progression sometimes exacerbated by

stress. This is why I think you may want to ask about HNPP.

Either way, I'm glad you're with the group and I wish you luck. From what

I understand, the genetic blood test does show HNPP.

I am also interested in hearing others experiences w/ CMT being

" episodic " . My neurologist thinks I have CMT Type 2. I know there have been

times when my CMT was slightly worse than it is now, but the episodes seemed to

be related to stress, lack of exercise or too much exercise wearing AFOs and

thus making my balance worse w/o AFOs.

Peace, Marti