Diagnosis Question

[Guest guest]

Last month I went to UVA to " get a second opinion " because they have a MDA

clinic there. Well to try to make my long story short the neurologist said that

he suspects I could have HNPP or CMT1A with a leaning more towards HNPP.Well I

have looked extensively on line about both of these diseases and I still ahve

some questions.

Can I have HNPP and have the very obvious CMT feet- extremely high

arches and hammer toes? And also have the " skinny " lower legs and

arms?

Can I have CMT1A and have numbness that comes and goes? Like being

numb in areas for weeks to months and then having the numbness fade.

I have a ways had this but it has gotten progressivly worse over the

years. Like right now I am pretty numb from my knees down almost all

over but some areas are worse than others. I have spotty numbness on

my lower arms. The numbness that is throwing me for a loop in my

buttox are numb (they went numb about 1 1/2 months ago) and my lest

shoulder is numb. I know from waht I read that with CMT you don't

typically get the numbness in these areas, but I also know that there

is no set standard for CMT.

I hope that these questions make sense and arent too rambly.

I look forward to any insight that any of ya have to offer.

Thanks,

Bree-Anne

P.S. I have the opportunity to get genetic testing done to determine

which it is. Do you think it is necessary? What would you do? There is a

possibility that I could be holding the bill for it when it is done?