Re: London CMT

[Guest guest]

HI JOANNA,

I HAVE HAD SIMILAR PROBLEMS OVER THE YEARS.BEEN DIAGNOSED NOW ABOUT 8 YEARS WITH

CMT.I AM 45 ,MY PHYSICAL SYMPTOMS ARE LARGE CALVES,SUFFER WITH REALLY BAD PAINS

IN MY LEGS.PAINS IN MY ELBOWS,WHETHER THAT IS CONNECTED I DONT KNOW.

THERE IS A NEUROLOGIST I HAVE SEEN,DR ELRINGTON,I SAW HIM AT COLCHESTER HOSPITAL

IN ESSEX, BUT I DO KNOW HE DOES WORK IN LONDON,PRIVATELY.THE NUMBER FOR

COLCHESTER 01206 747576, ITS THE HELP DESK THEY MIGHT POSSIBLY HELP IF YOU WANT

TO SEE HIM.THE DOCTORS HAVE PUT ME ON NEURONTIN CAPSULES FOR NEUROPATHY

PAIN,WHAT TABLETS ARE YOU ON?.IT WOULD BE QUITE NICE TO SPEAK TO SOMEONE THAT

HAS THE SAME ILLNESS.

Tony

[Guest guest]

Hi Jo,

Just a word to say hi - good to see you back online:-)

A couple of years ago I felt my CMT was getting worse and I wanted a

referral back to the NHS (I wanted a proper diagnosis too because the

last time I had been through the NHS was arround 9 years ago and at

that point some doubt had been cast on it. My GP was happy to do that

it my but then asked me would I like anti-depressants. I was really

quite offended beacuse relatively speaking I thought I was coping

pretty well.

Sometimes now I think if they could numb all the anxiety then it

wouldn't be a bad idea and then I hear about all the side effects and

think I'll hang in there til I really, really need them.

Like yourself my CMT appears to be being " monitored " and that's it.

I've been waiting nearly a year for Type 2 testing results to come

back but have resigned myself to having to help myself in terms of

physio (I got aqua therapy last year which was fantastic but you only

get so many sessions) and so on. I wish you the best of luck in

finding someone who knows about CMT but who can also give you more

support.

Take care (hope you're enjoying the weather!)

Fiona in Glasgow

[Guest guest]

Dear Fiona,

Thanks for your email...So pleased to hear that someone could understand exactly

the way one can feels Fiona..Yes, there is no other way than waiting but when we

have pain and see your body movimentes changed so drastically and can not do

anything it is very hard really.

Another thing is that I fall down very bad with my hips down on the

ground 3 times, and that also could be part of it. No one investigate

that either!

I am here looking for every possibility to find out the anwers for this very

strange movemnents with my hips, the gait is weird, and this

problem started 2 years more or less a go and they told me it was

bursitis? How come buristis will change the way we walk? I know it is

something to do with my hips been like dislocated or something else?

That is the reason of my frustation ... no having feelings no live my

life the way I used to enjoy before Fiona. The weather is so beautiful

now, I love the sun so much...as been Brazilian you can imagine it.

But right now I spend most of the times inside my flat...sleeping

until very late and that is not good , I know...but it is the only way

I can cope with life.

Yes, I always go to the gym, trying to go 4 times a week but my zest is not as

before!I won't give up!!! I am fighting, forcing myself t0 do things but the

energy level changed a lot!

Have a wonderful week end and take care always!

Joana in London

Hi Jo>

Just a word to say hi - good to see you back online:-)

>

> A couple of years ago I felt my CMT was getting worse and I wanted a

> referral back to the NHS (I wanted a proper diagnosis too because the

> last time I had been through the NHS was arround 9 years ago and at

> that point some doubt had been cast on it. My GP was happy to do that

> it my but then asked me would I like anti-depressants. I was really

> quite offended beacuse relatively speaking I thought I was coping

> pretty well.

>

> Sometimes now I think if they could numb all the anxiety then it

> wouldn't be a bad idea and then I hear about all the side effects and

> think I'll hang in there til I really, really need them.

>

> Like yourself my CMT appears to be being " monitored " and that's it.

> I've been waiting nearly a year for Type 2 testing results to come

> back but have resigned myself to having to help myself in terms of

> physio (I got aqua therapy last year which was fantastic but you only

> get so many sessions) and so on. I wish you the best of luck in

> finding someone who knows about CMT but who can also give you more

> support.

>

> Take care (hope you're enjoying the weather!)

>

> Fiona in Glasgow

>

[Guest guest]

Hi there Tony,

Thanks a lot for your email! That is true, so nice to be ale to talk to others

who does understand evrything..lol.

Feels like a big family here...So great for all of us!!!!

I think I have been to Colchester maybe 20 years ago, near Frinton- on

-Sea. lol ....

It is on the east side of the island isn't? Well, I will give this

doctor a call and ask him if he knows someone here in London, Tony. I

feel I really need others opinions now to refresh opinions about this

CMT . My GP gave me another pain killer called Co- codrymol and I do

take only when the pain is very bad.

Are you going to the pool and gym? I found that easy the pain and relax your

mind too.

Tony feel free anytime you want to email me directly.

Have a great week and thanks again!!!!

Best wishes

Joana in London

>

> HI JOANNA,

>

> I HAVE HAD SIMILAR PROBLEMS OVER THE YEARS.BEEN DIAGNOSED NOW ABOUT 8

YEARS WITH CMT.I AM 45 ,MY PHYSICAL SYMPTOMS ARE LARGE CALVES,SUFFER

WITH REALLY BAD PAINS IN MY LEGS.PAINS IN MY ELBOWS,WHETHER THAT IS

CONNECTED I DONT KNOW.

>

> THERE IS A NEUROLOGIST I HAVE SEEN,DR ELRINGTON,I SAW HIM AT

COLCHESTER HOSPITAL IN ESSEX, BUT I DO KNOW HE DOES WORK IN

LONDON,PRIVATELY.THE NUMBER FOR COLCHESTER 01206 747576, ITS THE HELP

DESK THEY MIGHT POSSIBLY HELP IF YOU WANT TO SEE HIM.THE DOCTORS HAVE

PUT ME ON NEURONTIN CAPSULES FOR NEUROPATHY PAIN,WHAT TABLETS ARE YOU

ON?.IT WOULD BE QUITE NICE TO SPEAK TO SOMEONE THAT HAS THE SAME

ILLNESS.

>

> Tony

>

[Guest guest]

Hi Donna,

Thanks for the welcome - it is good to share thoughts/anxieties with people who

are going through the same thing, although my partner is very understanding and

supportive.

As I stated, I am not really sure if I actually have CMT, and I am a little

concerned that when I see the neurologist he will not have heard about it and

think I am some kind of hypochondriac. Anyway, we'll see when I go in five

weeks' time.

In the meantime, I am remaining positive as I know from reading the e-mails that

things could be a lot, lot worse.

Hope you too are enjoying the lovely weather. We had a thunderstorm this

morning, which was great! (I love thunderstorms).

Best wishes