Moderator's Reminder

[Guest guest]

Please remember WHY we are here: to learn more about CMT through

sharing our experience. Please do not share " opinions " as this can

create disaster, and many years ago did in fact implode a CMT group

I was in.

Instead, share your feelings, based on your experience. And of

course, please also share what's good in your life, how you came to

accept CMT, how you maintain a positive attitude, etc.

This group is not meant as medical advice, or was it ever. No one

here can offer " medical opinions " nor should they. (and yes, doctors are

members) If you find something here of a medical nature that you feel could help

you, please talk to your doctor about it.

The key to learning about CMT is to 'relate', not compare yourself

with others. We span nearly all countries on the globe; we are multi-

ethnic; we have a litany of different ancesters; but, if you are

truly here because you have CMT, that is our common bond.

Because CMT is so idiosyncratic, and because of our own unique

genetic codes, we are affected differently, as members in the same

family can be. If you find help here, wonderful! If not, stick

around; it will come.

One final reminder, if you are sharing a research topic/page/or information you

have found, please site the name of the journal, date, pages, or give us the

link. We are always interested in what's new in the pipeline. Rest assured that

we all have enough brains and skill to use search engines that pull up all the

ordinary CMT basic information. Before you post your research, make certain of

it's date (should be as current as possible).

Thanks to all.

~ Gretchen

[Guest guest]

Gretchen,

I think many people may use this as an open forum to

yes certainly share their feelings but also offer or

seek support for those like me who have a hard time

staying positive. Research is good and at the same

time full of pseudo facts based upon narrow research.

I think if someone like myself has had bad experiences

with certain types of " treatment " or " care " then why

are we can't we express that? We all have opinions as

human beings and I certainly like hearing others

opinions to help shape or change my own. I was a

therapist for many years and I think if a group can

only share positive thoughts or feelings is not

necessarily going to lift spirits.

Sometimes too many facts about the disease leaves many

confused with so many contrasting theories.

If everyone here accepts their disease then I give you

a lot of credit but I hardly think thats the reality

for many.

The pipeline can be very helpful however the source

can be very inaccurate.

I am truly sorry if this post offends anyone and if I

am not welcomed I understand. I truly believe people

need to share good and bad experiences and have an

open forum to do so. I came into this group under

good intentions and I feel better knowing others need

the support that I do.

The other day I posted a topic about hopeless doctors

because of my poor experience. I haven't been to a

doctor in 15 years and the doctor who by the way was

highly recommended and posted on the CMTA site,

basically said there is no treatment for CMT. If

other people have other ways of treating themselves

and it works great share it and it may just give a

better quality of life for others. I wouldn't

recommend just taking a doctors word for it all the

time but I would never say don't see any.

Andy