Re: good healthcare

[Guest guest]

Boy, It sounds like you can get good care in England! Just like with the

disabled olympics, for people who are only physically disabled. I hear that it

is much more popular there and in Europe. People seem to be better able to help

those with physical ailments or more willing to help.

Here it's like tough it out and don't complain. So, even if you have no pain but

extreme difficulty walking, people here just don't understand you or don't even

attempt to.

I just got a new General Practitioner; and I never go to any Dr., except for

extreme emergency. Anyway, this guy thought CMT was pulmonary. Although the

breathing may be affected, he did not know the primary result is a demyelination

of the nerves. Worse yet, he wouldn't really let me explain it to him. He talked

over me and almost completely ignored what I had to say.

I try to be really patient though and hope they will understand that I will

expect that they'll look it up later if they intend for me to keep seeing them.

It's always making me think about moving either to England or somewhere else in

Europe. Well, glad to hear that some CMTers are getting treated well. Seriously,

take care.

Dawn

[Guest guest]

I too have had trouble with Dr.s understanding what CMT is. I don't

understand this since it is suppose to be one of the most common

neuromuscular diseases. After 15 years with a Dr. that knew me well

and understood, we moved to a new area and now I only go to the Dr.

when I absolutely have to usually due to a big fall to make sure

nothing is broken. I have seen several Dr.s and when I tell them I

have CMT I have had comments like " What makes you think you have this

disease? " or I had one Dr. ask me suspisiously " Why do you have all

of these falls " like she thought maybe I drank too much or

something! One Dr. looked up CMT on his computer in his office and

said " Well, let me see if I can tell you some things that may help

you. " I thought I could probably tell him way more than he could

read in that article.

I have seen some great Dr.s in the past that knew CMT but was told

basically that there is nothing they can do.

Because my family consists of so many CMTers we understand and help

each other. Most people do not understand something they can't see

(Dr.s included) and since we look normal(other than walking funny,

they all seem to notice that) it is assumed we are, so when we make

excuses for not doing something that we just can't do it is assumed

that we are just making excuses.

The conclusion is I told my family that unless I am bleeding profusly

or unconcious there is really no need for me to go to the Dr. I

really am a positive person and handle this all in stride. I don't

mean for this to sound negative just practical.

Cyndi

>

> Boy, It sounds like you can get good care in England! Just like

with the disabled olympics, for people who are only physically

disabled. I hear that it is much more popular there and in Europe.

People seem to be better able to help those with physical ailments or

more willing to help.

>

> Here it's like tough it out and don't complain. So, even if you

have no pain but extreme difficulty walking, people here just don't

understand you or don't even attempt to.

>

> I just got a new General Practitioner; and I never go to any Dr.,

except for extreme emergency. Anyway, this guy thought CMT was

pulmonary. Although the breathing may be affected, he did not know

the primary result is a demyelination of the nerves. Worse yet, he

wouldn't really let me explain it to him. He talked over me and

almost completely ignored what I had to say.

>

> I try to be really patient though and hope they will understand

that I will expect that they'll look it up later if they intend for

me to keep seeing them.

>

> It's always making me think about moving either to England or

somewhere else in Europe. Well, glad to hear that some CMTers are

getting treated well. Seriously, take care.

>

> Dawn

>

>

>

>

>

[Guest guest]

Someone mentioned that healthcare was great in England.

I don't think it is all that amazing. I have a six month wait to get

orthotics re-cast for my feet. Sure it is " free " as in my National

Insurance contribution from my salary pays for it, but 6 months is a long time.

My typical neuro appointment is about a 4 month wait.

Since I do not have bad symptoms none of this matters for me. But for those

with real problems it is a real problem. For example, it can take one month

from spotting a breast lump to getting a date for breast cancer surgery,

sometimes longer. That is unacceptable. England has nearly the bottom of the

league tables in Europe for cancer longevity.

Sometimes I think the grass just seems greener on the other side - it is our own

approach that can make any situation with doctors better and bearable, in my

opinion - and patience is so vital...

Donna from London

[Guest guest]

Ohhhhh not good news!

Thanks,

Geri

[Guest guest]

I have had lots of trouble with doctors...some of them don't know about CMT and

those that do...don't give a darn and are unwilling to learn.

Geri

[Guest guest]

Cyndi,

I'm really glad you have family members who have CMT. It's very difficult

without it, from my experience. I completely agree about the Drs. I'm sure we

know more than alot of them do & about being positive. I push myself to the

point where I can't even sleep at night. Always thinking of more I can do. I'

glad to read what you wrote.

Dawn

[Guest guest]

That is so true, Cindi! I never go to my doctor except for an annual

checkup so I can stay on their data base. Here in so. CA one can get dropped

from a doctor's patient list if one doesn't check in once in a while.

I go to my other doctors for maintenance yearly (PAP smear, mammogram. etc.)

but I do not go to my neuro unless there is a problem. I have been told there

is nothing they can do for CMT so why bother.

Karon