I have the belief I have CMT, I have been to see a Neurologist who took blood samples but has not really come back to me with anything more than "Kappa chains" were out of tolerance.
I've had nerve conduction study which was reported "moderately severe axonal motor sensory neuropathy"?
All this has taken since 1st visit in September 2016 to date. No follow up apps have been made until I phoned the neurologist secretary to ask what is happening? I now have an apt for October 2018.
As no one seems to have concern about my condition I am worried that the next apt will result in another years wait?
I feel so bad every day, hardly being able to walk downstairs in the morning, sleep is very difficult, after an hour or so the legs realise they have to work and the day improves.I've lost huge amounts of muscle in both legs and arms.
The worst thing right now is the head which feels like "the lights are on but no ones at home"
I'm almost 73 and can tick most of CMT's boxes and it has been said "I'm surprised if you have this disease " by a private neurologist.
I have 3 young children 23-29 and am worried about them? They also have raised arches.
Aly thoughts ?