Just diagnosed - many questions

May 11, 2006

Hey everyone.

I am 26 years old and live in southern New Jersey. I have always had pes cavus

(high arched) feet. For as long as I can remember I have had difficulty

walking. The outer soles of my feet and my ankles are always in pain,

especially after standing or walking long distances. I can't really run, have

no coordination and was always picked last in gym class I just always

thought I was abnormal or lazy. People would always tell me to stop

complaining. When a flight of stairs without railings presents itself I get

really upset because I know I will have a lot of difficulty.

I have been seeing a podiatrist since I was about 10 years old. I

do have orthotics which have been refitted numerous times and still

don't help the rolling out of my feet or the pain. Just recently

the foot pain was becoming a very big issue so my mom suggested I

try an orthopedic doctor.

I went and he suggested I have EMGs done right away. The results came back that

I most likely have CMT. We then contacted the CMT Association, who, after

pulling it out of them, suggested a neurologist. I had the EMGs redone and I am

waiting for the results of the blood test. The neurologist said my mom does

have a very mild form of CMT which barely effects her. My grandmom and great

grandmom most likely did have it, but were never diagnosed.

So there is my story in a nutshell. I am thankful for finally

finding out that I am not crazy or lazy. I just cannot understand

why none of my doctors (especially my podiatrist) never picked up on

my CMT.

So here are some questions:

Where do I go from here? The neurologist really didn't have any

suggestions. He said he deals mainly with the nerves and what

causes CMT, not with daily living suggestions.

Should I see another type of doctor? If so, where do I find

suggestions? Should I be doing PT? Should I be doing anything in particular?

Just wondering if anyone knows if I could do anything legally when

it comes to the fact that my podiatrist didn't diagnose my CMT for

16 years.

I signed up for the CMT Association Conference. What do you all

think about the CMTA?

Should I join the MDA?

I guess that is enough questions for now.

Thanks in advance for all your help!!!!

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