Re: welcome Peggy (looking for help)

February 1, 2008

Peggy,

This is addressed to and I have just recently posted so I'm guessing the

question was intended for me.

Just a little over a year and a half ago I was having terrible pain in my right

foot. It was initially diagnosed as plantar faciatis but just kept getting

worse. The first set of X-rays showed no obvious breaks. Things continued to

get worse. I was referred to a Dr who specialized in things like arthritis and

lupus, I forget the

specialty name.

He noticed my very high arches and immediately suspected CMT

and referred me to a neurologist. My diagnosis was the result of an EMG,

apparantly my conduction is so bad that he is surprised I am able to walk. I

have not had the genetic testing yet so really have no idea of the type, I may

proceed with that this spring.

The issue with the foot was a Charcot joint in the ankle which can result from

any peripheral neuropathy, lots of little breaks and I spent 7 months in a cast.

I now wear a brace and still have some pain although not nearly as bad as it

was. At some point I will have to have fusion surgery but am putting it off as

long as I can.

Thankfully, I do not experience the neuropathy pain that so many other CMT'ers

do, at least not yet.

Gretchen had posted a matrix some months ago with the subtypes and I seem to

recall that the type 2's tended to present, or at least cause more problems

later in life, after 40 or so. I suspect that we will find that I have one of

those types.

In spite of the frustrations that I shared about experiences over the years, I

am still grateful to have led a mostly uncomplicated life resulting from the

CMT. My heart goes out to the parents on this group whose children are impacted

far greater than I ever was or even am now.

I am adopted so have no extended family experiences to share. Sorry to hear

about your sister and I understand your concern about your son, I watch my kids

very closely for signs that they could be experiencing trouble.

Best wishes and stay connected to the group, there is great comfort here in the

sharing of experiences if nothing else. To listen

to the stories of others who actually experience the same things you do is a

blessing.

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