London CMT referrals and physiotherapy

[Guest guest]

Hi Jo,

I would see if you can get a further referral to Reilly or Mr Hanna. I

think they are both at the National Hospital for Neurology, but also I know that

they practice at University College Hospitals too.

In my experience the exercises my physiotherapist through the Middlesex hospital

off Tottenham Court Road gave me (the ones to strengthen the gluteus flexors -

called hip extensions) have really worked.

Because of my house chaos I am not really seeing anyone, talking to anyone, have

lots of meetings with builders so my free time has disappeared. Anyway that

meant I was not doing these every day. Combined with lots of stairs in my new

home, my hips started to feel odd again (something just kind of tickling deep

inside).

Long story short, we have no baths or showers at home for a while

so we are going to the gym every day and I just redesigned a programme for core

strength including my physiotherapy exercises. After just a week the difference

is so noticeable - the funny tickle is much much less.

I would make sure to go to a physio if they recommend it. And doing the

exercises at least 5 days a week.

For an orthopaedist, I went to see Mr Lloyd at Middlesex hospitals. He

knew about CMT.

But bear in mind many of these good doctors work and teach their juniors. So you

never get away from the feeling of people asking lots of questions and learning

more from you than helping you. It is just a matter of really being patient and

explaining lots of times to get help.

Will try to call soon once my personal life settles a bit,

Donna from London