TO ALL MEMBERS IN LONDON PLEASE

[Guest guest]

DEAR FRIENDS,

GOOD AFTERNOON!

I JUST DON'T KNOW IF ANYONE HERE COULD HELP ME IN ORDER TO FIND OUT IF WE HAVE A

VERY GOOD DOCTOR IN LONDON.I AM LOOKING FOR A GOOD SPECIALIST IN CMT.

AT THE NEUROSURGERY HOSPITAL I COULD NOT FIND HELP THERE FOR YEARS...

I HAVE BEEN VISITING THAT HOSPITAL ONLY ONCE A YEAR AND EVERYTIME I

FEEL I AM ON STAGE WITH FEW DOCTORS LOOKING AT ME LIKE IF I AM A

PERSON WHO COMES FROM ANOTHER PLANET...

THEY ALWAYS ASKED ME A LOT OF QUESTION BUT NOTHING ELSE COULD BE DONE

SO FAR...I FEEL THEY JUST MONOTORING MY CMT AND NOTHING ELSE.THEY

SUGGESTED PHYSIOTHERAPY !!! WELL, I HAVE BEEN DOING THAT FOR QUITE WHILE TOO...

I HAVE BEEN WORRIED FOR QUITE SOMETIMES, TAKING PAIN KILLERS AND STILL HAVE PAIN

AND MY GAIT IS NOT RIGHT WHILE WALKING..FEEL SO HEAVY WHILE WALK AND EVEN TO BE

STANDING UP IS SOMETIMES HARD BECAUSE OF THIS POOR BALANCE.

I DID GO PRIVATE TO SEE AN ORTHOPEDIST BUT STILL WAITING TO HEAR FROM

HIM...HE COULD NOT READ MY MRI ...SAYING HE WOULD NEED TO SHOW MY MRI

TO A RADIOLOGIST..AND I AM STILL WAITING!!!

I WOULD BE PREPARE TO SEE SOMEONE NEW THIS TIME...BUT SOMEONE WHO

REALLY UNDERSTANDS CMT...THAT IS THE MOST IMPORTANT THING.

I WONDER IF SOMEONE OUT THERE KNOW ANY GOOD SPECIALIST IN THIS FIELD?

THE LAST TIME WHEN I SAW MY GP SHE THOUGH I COULD TAKE ANTI DEPRESSANT? WELL,

THE REASON WHY I FEEL REALLY UPSET, DEPRESSED IS BECAUSE NO ONE YET HAS BEING

HELPED ME ...AND A ANTI-DEPRESSANT IS NOT THE ANSWER...

I WOULD LOVE TO THANK YOU ALL FOR THE HELP AND SUPPORT!

BEST WISHES

JOANA IN LONDON