Re: hearing loss/voice /swallowing

May 11, 2004

Mieke and Jim: I've been following posts specific to the voice, sight, and

hearing issue fairly close. Having HNPP, I have similar issues and have not to

date found any research specific to extensive studies regarding these issues in

relationship to HNPP vs CMT (and sub groups). As both HNPP and CMT-1(a) stem

from the PMP22 17p location with a deletion factor to the first and addition to

the second, the common threads abound linking the two on the gross level. My

most recent audio testing gave results of neuro deficits in the high and low

range. The report went on to say that my " conversational hearing " did not

require assistance at this time. The optomologist suggested I have cataracts in

both eyes, however, I am symptomatic for most of a given day and sometimes for

days. That lends me to agree with a second and third opinion received within a

month of the first that there may be neuralgia within the optic region of

nerves.

The swallowing issue is yet another common thread - at least for me. It began

significantly post surgery for C-6 fusion in 1989. I was unable to swallow oral

meds and was given another 4 days beyond the normal stay at hospital. I was

seen by an ENT specialist while in hospital and followed up with a barium

swallow test. The results indicated a " shelf like appearance on the right side "

of my throat. The ENT determined it was probably caused by " ruff handling while

being intabated for surgery " and should clear up nicely. Well, it didn't. I

still have much difficulty swallowing solid foods as well as " guzzling " fluids.

Short, slow sips is the method to insure avoiding choking. Small bites of solid

food, chewing until pulverized, and then swallowing is the plan of the day.

It's not been defined as an HNPP anomalies as yet by all the research documents

I've been able to read. I'm sure there's more out there I haven't been able to

find. But, all my 11 doctors have not addressed the issues fully yet. I will

be " gently pushing " them toward testing at the very least and answers at the

very most and soon.

rQn I

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