Ok, i have neurological genetic condition called Charco-Marie-tooth Syndrome, or CMT for short.
I had/have the usual deformed feet/high arches/hammer toes etc that distinguish the condition and the lack of electrical reflexes, as well as the muscular atrophy in the lower limbs.
Thing is, my doc knows bugger all about it and told me to google it myself!
I’m having problems with my elbows and hands, painful elbows with athritic symptoms and a loss of grip strength in my mitts with occasional locking up of the fingers.
I can look this stuff up, but lack the medical knowledge to make sense of it, so.. i want to go back to the doc and demand a specialist MOT to find out if/how my CMT is progressing and what i can expect in the future. Got a nasty feeling a wheelchair could be in my eventual future and i’m not happy about it. How can i gather the relevant info?

Is there a self help group? Maybe this? http://charcotmarietooth.webs.com/cmtinfo.htm

I have never heard of this before.

To understand what the various medical terms mean is not hard – its usually a device to deliberately mystify the lay person. Get a medical / nursing dictionary and translate like it was another language

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That’s a bit of a lazy answer, but I suspect you will get much more info from them, especially from the local support group. That having been said, I would take even their advice with a healthy pinch of salt and try to find the UKs leading docs who are interested in it and see what they have to say.

I’ve tried the CMT group & TBH they are a bunch of effin’ cripples!

Constantly tried to tell me i was a lot worse off than i am, that i was entitled to be registered disabled and to apply for state money etc. I’m not disabled, i do manual work, ride bikes and run around (slowly) in bloody armour! It’s just getting a little more painful to do so.

TJ – its a genetic condition where the myelin coating of the nerves at the extremities is faulty, causing a reduction in the transfer of nervous impulses and resulting in the ‘clawlike’ look of the foot, with very high arches and hammer toes. I had the ops when i was a kid where they extended the tendons and broke and reset my feet/toes – was a bit of a bugger being bed bound for months at a time.

I’m just wondering how to get my bloody doc to take my concerns seriously.

I’m just wondering how to get my bloody doc to take my concerns seriously.

go back, ask for a referral to a specialist, if declined ask for the “go and google it for yourself” advice in writing so you can forward it to the GMC

Constantly tried to tell me i was a lot worse off than i am, that i was entitled to be registered disabled and to apply for state money etc.

can’t be true, no advocacy group would ever suggest that you are worse than you are…..