Re: Re: getting a diagnosis CMT type

April 5, 2004

Dear Rita,

Thank you so much for your kind words. As for types. OK you know you

have HMSN. That is short for Hereditary Motor Sensory Neuropathy and

perhaps more correctly explains what we know as CMT. It is the same as

CMT - just a newer name. When I was diagnosed, the first name I was

given for " my disease " was Peroneal Muscle Atropy - then came the words

CMT. And so on we go.

You must have had the EMG/NCV test (little needles/with current) Well,

Types 1 and 2 can be defined from the results of those tests. But that

leaves out Type X. I do not know where Type X fits into an EMG/NCV test.

Now something new in recent years: subtypes of 1, 2, x, plus other

numerical types. Only some, and a few at that, of these can be detected

by a DNA blood test. Like for example, CMT 1A can be confirmed that way,

or Type 2E also. And there are others. But not all of the subtypes with

letters have a blood test for them. This link will amaze you. At one

time I found 53 substypes of CMT or HMSN. It grows every time I look at

it.

It's great that you carry on. Have you considered seeing a

Rheumatologist or Orthopedist specializing in arthritis? There are some

very good medications out there for pain - non narcotic, not habit

forming ones. Just ones that might make your pain feel less and less.

Also, if you have a physical therapy center with a pool, just being in

the water will make you feel so good (so warm and soothing) and they

have a lift/swing here for persons who use scooters or wheelchairs, so

no walking is involved.

Being in the water also takes the stress off the joints. It is relaxing.

Hope this is helpful a bit. ~ Gretchen

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