Introduction

[Guest guest]

Hello! I am recently diagnosed and am interested in people's

responses to these questions. I am 32. I have high arches and started

having tingling in my extremities about 6 months ago but currently

have no other symptoms/problems. I went through a series of doctors

who intially thought I had MS, but most recently saw a neurologist who

did the nerve conduction tests on me and then told me he 'thinks' I

have CMT and 'not to worry about it'.

- I'm assuminging that I do have CMT, and that there is not much point

in doing blood tests, based on what else I have read on this site.

What are the insurance implications of having 'neuropathy', but not

confirmed CMT? Any opinions about that? I'm wondering if I'm better

off not doing any more tests (from the view point of getting health

insurance in the future, obviously I'll seek to avoid CMT harmful

medications anyways) I'm considering going to Wayne State to try and

confirm my diagnosis and find out which kind I have.

- I like to run. Is there any reason that I shouldn't as long as I am

able to? I read one persons opinion that you shouldn't 'wear out' the

body, but other opinions (which I tend to concur with), that there is

no point disabling myself if I'm capable of running.

- Because of my work, I move jobs (and countries) frequently. I'm

worried about the insurance implications of having CMT. Can anyone

comment on the difficulties getting insurance when having basically no

problems (like now) and in the future, when I might have more problems?

- I'm a teacher. I'm on my feet all day. I'm hoping that due to my

late onset and mild symptoms, that I will be able to teach until I

retire. Obviously noone can predict the course of my CMT, but perhaps

any teachers out there or people with CMT family members can comment

on the likely hood of this - if it is extremely unlikely I might

consider changing careers sooner rather than later.

- I'm wearing arch supports now. Should I be wearing night splints? Do

they retard foot drop? Or using any other kind of orthotics? My

understanding of orthotics is that they don't prevent anything, they

simply help your mobility - so since I'm walking fine now, I shouldn't

use anything other than my arch supports.

- So far I've been bouncing through a series of disconnected doctors

(a neruologist, sports doctor, a PT, etc...) at a large complex of

hospitals. It seems that it would be much more helpful to go to a

single doctor who has specific CMT experience who can answer these

kind of questions and give connected medical advice. I got a list of 4

doctors in the Madison WI area from this site. Can anyone, however,

personally recommend one?

Thanks! Robin