Introduction: Hi, Everyone!

[Guest guest]

I'm new here, I'm 28, and have CMT but haven't been " officially "

diagnosed. I inherited it from my dad who got it from his mom, so it

seems to go that way. We have several other family members who have

it as well. I have the typical symptoms - the obvious feet, hand

problems, balance, walking, hip problems, etc. I've had these

problems since I was a little kid.

I remember the school I was going to when I was about 6 or 7 wanting to do some

sort of tests on me cause I had problems doing hop-scotch in school, but I was

promptly taken out and I am still glad my mom did that. lol. I have tried to

lead as normal life as possible, and it has been difficult at times, but I just

carried on, and during my early 20's apparently also came down with fibromyalgia

and chronic fatigue syndrome and I have wondered if I also had arthritis.

I did have insurance a couple of years ago, and decided to try to get help for

this, but everywhere I went had no answers for me. I thought I'd conquer the

fibro/CFS first, and then perhaps go on to doing something about the CMT.

One particular fibromyalgia dr. actually put me on a ton of pills, and had me

taking heparin shots in my stomach which I then had a (what we all believe to be

a) heparin overdose (which was horrid).

Unfortunately, even though I explained the CMT to this certain dr, he

really could care less about that. Well, that was it! No more of

that.

As of last october, I overcame the fibromyalgia (or

in " remission " as I call it) with diet and evergy healing

called " Reiki " (which I fully believe in). Just when I was thinking

of taking on doing something about my CMT,(I had called a dr here

with an appt.) we lost the insurance.

A couple of years ago, my husband (who has been a great support to me) saw the

walkfit orthotic commercial and got me some of these, and they seem to be pretty

good and help. (does anyone else know about these and what do they think?)

I have issues however with wearing tennis shoes and so I don't wear

them all the time. It's a girl thing. I need to get over it, don't

I... I try very hard to just be " normal " and not " claim " it. I always

have a problem " accepting " the CMT part especially. Should I accept

it? and I think I might be ready to really do something about it ..

but then again, I am not sure ... One reason I have tried not to go

through the diagnosing part is because I am scared to death about the

EMG and at the time, I thought it would affect the Fibro/CFS

negatively.

I don't believe this would come back but I don't want to " test " it. I know there

is a blood test you can do and would rather have that (since I've had TONS of

blood tests, I am an old pro!) but when I HAVE inquired on it with the drs, they

always insist on the EMG. Why can't they have any understanding?!

Well, I am sorry that this is so long, but this was a bit therapeutic

to get out and am trying to figure things out about all this, and

what the right thing to do is. I do want help, and want to make my

life better about this, but at the same time, I feel as if it's

almost 'defeat' in breaking down, but I am worried how I will end up

later on in life. (I know my dad isn't doing so good..)

Thanks for listening to me. Hope everyone has a great day!