Hi Diana, Kitt, Lynxgal and Trish,

I have HNPP, and as Kitt says it does tend to be more episodic than CMT1a, but does become blurred together with time. I think though that there is quite a bit of cross over between the two, neurologists like to highlight the differences because that helps them to diagnose. It's only through these forums and others where we can compare and contrast that perhaps we realise that there are just as many similarities as differences.

Diana, you mention your ear ringing, tinnitus, do you have any noticeable deafness in that ear?
I have bilateral hearing loss, tinnitus and episodic vertigo, which has been diagnosed as Meniere's disease some years before my HNPP diagnosis. One ear is much worse than the other. I have doubts about the meniere's diagnosis, only because it is really syndromic, there is no known cause or cure and is a diagnosis by exclusion of other known causes. My hearing loss deviates from typical meniere's which leads me to think that demyelination of the acoustic nerve may be involved. There are ways to test this, but I have never had these tests. I think much could be learnt from testing, but that won't happen unless I can afford to pay for the tests myself.

Hearing loss in CMT1a and HNPP has not often been reported in medical studies, but there are a few studies which indicate that a certain level of prebycusis (early onset age related hearing loss) can occur. This is termed Sensorineural hearing loss, although if demyelination of the acoustic nerve is the cause then it should really be neural hearing loss, a type of auditory neuropathy. However, it might be a mix, as having CMT/HNPP does not exclude us from having other ailments.

There is so much to absorb after diagnosis, it can all get a bit too much. I hope I haven't added to this overload. Kitt has given some great links.

Jon

Edit: HNPP is sometimes referred to as being painless, some palsies maybe, but generally there is often a whole range of neuropathic pain symptoms, pins and needles, electric jolts and stabs, burning sensations etc, mostly in combination with sensory loss. Secondary sprains and strains are also quite common.