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Re: Boston CMT

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Hi ,

I am also " sort of " from the Boston area. I live outside of

Burlington VT now but grew in Springfield,MA and RI. As a child I

was taken to Boston Childrens Hospital where I was diagnosed

with " periphal neuritis " or " chronic neuropathy " . Did not even hear

the CMT diagnosis until I went to an MDA clinic at RI Hospital.

It's hard for me to imagine MGH being so remiss in your diagnosis.

Boston hospitals have a reputation of being world-class. Although I

must say some of my childhood visits to Childrens left a not so good

lasting impression on me.

I found the best doctors at the Worcester MDA clinic. They were the

most educated and informative doctors that I had interacted with with

regard to CMT. You may want to try and get in touch with that clinic.

It is definitely hard at first. You may want to try the approach

of " I'll learn to live with this " rather than trying to " accept " it

right now. I found that a bit easier. I don't know if I have

ever " accepted " this disease.

I work for a company that has an office in Boston and I am down there

nearly every month. If you would like to get together and chat I'd

be happy to meet you somewhere.

I will be down there next Friday (July 22) as well as in the

beginning of August if you are interested.

Cheryl

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