update - there is hope for patients in england...

[Guest guest]

Or at least I had a good experience today at the National Hospital for Neurology

and Neurosurgery.

For the first time a doctor said to me that they wanted to do a regular

maintenance programme of check ups and visits. I was scheduled for a follow up

visit with the PT, OT and for another EMG to see progress. They indicated that

although there was no cure they would do their best to share best practice and

to work on management. I was given a nurse's name to call anytime I wanted help

or information.

Great news for me as I am really wanting a letter to say that I can take my

shoes off at airports while seated - which a note is required to do in today's

security environment!

It is always refreshing to feel listened to. I really felt being well read on

CMT through this group, and that having a copy of the basics of my medical file

with me, both were a real help.

There is hope for good care!

Have a great day,

Donna

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[Guest guest]

Hi Donna

That's great news for you! What a wonderful group of physicians you

found. I hope that they will continue to give you such great

support.