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Hi ,

This is Donna from London. Welcome!

My background: I was diagnosed in 2005 because I had done a half marathon in

2004 and my foot seemed to start to drag at mile 13 and it ached. I thought it

was due to the need for orthotics as I had high arches, I saw one guy who

handles Arsenal's inserts but the solution did not fit right, so I took myself

into the NHS and started seeing people. One thing led to another, an MRI on my

ankle, and EMG, and then as my father in law told me I was a clinical trial for

med students at Middlesex hospital UCL (teaching hospital) and I got my

diagnosis.

I am not really too impacted by CMT. I notice fatigue but can't decide if that

is because I burn the candle at both ends. I have orthotics (inserts) for my

trainers and they made it ok for me to walk a full marathon and a 60k without

too much of a problem.

Now my biggest thing is just getting to the gym and - I am in the midst of

getting my programme going and back into the routine.

Anyway, as my father in law is a consultant neurosurgeon and a professor at UCL,

I have asked him for neuro advice. Who are you seeing in London? Neurologists

are the best people to see as they will join up all the different parts of the

case to get a CMT oriented picture (although do keep track of your own files as

they often go astray). Good neuros who according to my father in law have good

CMT experience are Mrs. Reilly and Mr. Hanna - they are both at the London

Hospital for Neurology and Neurosurgery.

I see Dr. Hanna's junior staff through UCL Middlesex. The main place to see

Reilly and Hanna though is at the neurology hospital or even at University

College Hospitals, the new one on lebone Road. Although I have an

outstanding call on my neurologist (genetic testing etc) I have not been in

about a year.

Reilly or Hanna will be able to help you with the breathing question for sure,

and point you to the right doctors. Ask for a referral to them. I would

strongly encourage getting to see Reilly as only her patients will be eligible

for some clinical trials that are currently doing the funding rounds (Vitamin

C).

Anyway, welcome welcome again, and I hope that you take a lot of benefit from

this site. It is a true fountain of information here!

Donna from London