My Introduction

[Guest guest]

My name is Bloe, I am 40 years old & have been diagnosed with CMT-X & live

in East Sussex in the UK.

As a result of physiotherapy when I was a small child I walked on my toes

resulting in both my achilies tendons not growing to the correct length. This

caused me problems walking & as a result gave me severe hip pain from time to

time.

In 1997 I had both of my achilies tendons surgically lengthened by two & a half

cm. I will never forget the day I stood up straight with both my heals on the

ground. At this point the surgery & associated pain was all worth it.

During the 18 months of post operative physiotherapy I had started to beleive

that I would be ok & finaly get to play rugby. Unfortunately, my pain was on the

increase again & my hands started to shake some times that I realised there may

be more to my problems than I expected.

Three years ago I was referred back to the consultant neurologist I met before

the surgery, becasue of the increased pain & shaking. He referred me back to

another consultant who had left me with some

unpleasent memories involving needles & elcetricity!

The end result has been that after a dna test I had cmt-x diagnosed.

I have a few questions that I hope you can help with:

I am currently prescribed 100 mgs of amiltrytiline each night. Is this a common

drug to take for cmt at this level?

I have a low potassium level in my blood & I am taking6 x 96 slow K tabs (600mg

each) daily. Does anyone else have experience of this?

I am getting alot of pain in both my thumbs now, is this the onset of cmt in my

hands?

I was persuaded to contact you by my wife who feels I need to hear from other

people who suffer with cmt. I have to admit she is right.

Kind regards