Re: issues with doctors/specialists

[Guest guest]

hi,

i too have braces,but IF i am honest, i have to admit that i don't wear mine

like i should, i know that i should, but they are heavy as well, but mine are

just plastic and they are still heavy.. i don't know what to do,b/c when you try

(or i try to explain) to the dr's or specialist, i feel like i am talking to a

wall, it's like they don't understand what i am trying to say, or maybe they

don't want to understand.

i was supposed to have gone back to see the specialist a while back, but i

didn't go, didn't think i had the " argument " in me to try to explain it all to

him. I know that is WEAK of me.. i just go to so many dr's for so many things

that i totally get disgusted at times with all of it.

does anyone else have an issue anywhere close to this? or am i the only one?

Thanks for letting me vent.. do hope all is well with everyone.. i am to have

surgery wednesday the 30th. it's a personal surgery.. please keep me in your

prayers this surgery has

nothing to do with my CMT. Take care and GOD BLESS YOU ALL... with love,

tracey

From: Geri Logan <hotwheels@...>

Subject: Re: metal braces

Date: Friday, March 25, 2011, 1:40 PM

 

I dont know what my braces are made of but they are cumbersome and heavy....even

five lbs each is to heavy for me. Have trouble walking as it is.

Geri,

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[Guest guest]

Tracey

I am a 63 yr. woman with CMT. I’ve shown signs since my teens, but didn't get

braces until 29. For years they just sat in the closet. They were cumbersome,

embarrassing and I just couldn't accept the fact that I needed them. What a sad

day for me when I didn't have a choice anymore.

I thank God for them. When I get up in the morning I tell the dogs to wait until

I get my legs on before we go out. So I say if you still have that choice enjoy

the time you have.

While I’m here does anyone have a suggestion for pain medication? I have

severe peripheral pain. I take Neurontin and Methodone. The side effect from

both of the drugs is horrific. I wish I could take something that didn’t make

me feel like I was in lala land all the time. Thank you for your time.

Sharon

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[Guest guest]

Sharon,

The fentanyl patch provides a better quality of life when on opiate/opioid meds.

You could ask to substitute from the methadone to the patch. Once I gave up

oxycontin and went to patch only, my quality of life went way up.

Also, I am at a point where, via my yoga exercises, my CMT and its pain have

been pushed significantly backward, and I am regaining lost control of things

like ankles, so much so that I have successfully been liberated from my

miraculous orthotic-boots made from me by the rehabilitation polyclinic of the

University of Amsterdam's Academic Medical Center in 2005,6, and 7.

The yoga in the yoga tuneup style (www.yogatuneup.com) has successfully pulled

me out of these boots and now I can again, after 17 years of needing a brace on

the right foot to prevent injury, I can walk in normal walking shoes, while both

feet/ankle pairs will now stabilize and hold me in a stumble, until the other

foot can be repositioned.

I slipped on dog duty about 2 weeks ago, which, until 2 years ago, would have

dislocated my knee, hurt my ankle, and bought e screaming in pain to the ground.

This time I remained standing.

I am now taking stair steps downward without pausing at each step for fear of

failure of knee or ankle.

But I am now off topic.

Ask about nortriptyline as well,as this is a pain signal scrambler.

I hope this helps.

P.S. we are going to try now to step down on the patch dosage, as I am on the

highest one, as we believe my pain is actually reduced enough that I may be

successful in doing so

On Mar 31, 2011, at 9:32 PM, Sharon wrote:

> Tracey

>

> I am a 63 yr. woman with CMT. I’ve shown signs since my teens, but didn't get

braces until 29. For years they just sat in the closet. They were cumbersome,

embarrassing and I just couldn't accept the fact that I needed them. What a sad

day for me when I didn't have a choice anymore.

>

> I thank God for them. When I get up in the morning I tell the dogs to wait

until I get my legs on before we go out. So I say if you still have that choice

enjoy the time you have.

>

> While I’m here does anyone have a suggestion for pain medication? I have

severe peripheral pain. I take Neurontin and Methodone. The side effect from

both of the drugs is horrific. I wish I could take something that didn’t make me

feel like I was in lala land all the time. Thank you for your time.

>

> Sharon

>

>

>

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