Sever swelling/edema in lower legs & feet

[Guest guest]

Hello All:

My mother and I both have CMT. She is 65, and for over the last year

she has had EXTREMELY severe swelling in her lower legs & feet. It has gotten

so bad at times that they are so huge and full of fluid that blisters form and

her legs actually leak! Needless to say it is also very painful.

She is on a couple of diuretics, has been tested for & cleared of

congestive heart failure, diabetes, blood clots & many other things that can

cause

this type of swelling. Some meds like LYRICA have even caused the swelling

to INCREASE, so she had to stop taking that, which made her pain level go up

again. She has to wrap them every day and keep them elevated as much as

possible to try to alleviate the swelling, but most times it doesn't even go

down

overnight. The only time it has gone down and stayed down for any length of

time is when she was recovering from pneumonia last year in a nursing rehab

center. There she was on a regular schedule and was up & active most of the

day. As soon as she got home, the swelling began again, almost immediatley. She

is very inactive (which does not help the situation), & now has to use an

electric chair around home and scooters outside. She also has a knee that is in

very bad shape, which just adds to the complications (a whole 'nother

story!).

DOES ANYONE OUT THERE IN OUR CMT WORLD SUFFER FROM THIS TERRIBLE TYPE

OF SWELLING/EDEMA THAT WON'T GO AWAY? Perhaps someone has had this happen and

found a solution & relief?

All of her doctors are just throwing up their hands in frustration and

don't seem to want to try any more, since nothing seems to work & they cannot

find an answer or cause. I am quite upset at them all, because she is

looking to them for some kind of hope, compassion and a " never give up "

attitude,

but instead they want to shoo her away to see a different doctor time & time

again, who gets just as frustrated. Their negative attitudes due not being

able to pinpoint the cause and " fix " her has rubbed off on her, which is not

good.

I am at my wits end (and of course SHE is!), and feel utterly helpless

in the situation other than praying to God. I hate seeing my mother suffer,

and I just KNOW that the right doctor can offer her help. I feel like there

just HAS to be something relatively obvious these doctors are not testing for

and/or looking at or for, ya know? Sometimes they can't see past the CMT

(which most of them only know a weensy bit about anyway!), so they just blame

it

all on that, but then do not offer any help! Argh.

ANY ADVICE ON WHAT KIND OF " specialty " DOCTOR SHE SHOULD SEE? (other

than neurologist, pulmonologist, cardiologist, osteopathic) Maybe we need to go

to the Mayo Clinic? Or see a CMT specialist, perhaps in Houston (we live in

Corpus Christi, TX)? Anyone, anywhere.....PLEASE HELP!!

Any and all information, advice, suggestions.....anything & everything

that can possibly, just maybe lead us to find a way too put an end to this

constant swelling will be greatly appreciated.

I thank you all dearly for letting me vent and rant. I look forward

to hearing back from you.

Have a very blessed day.

Peace,

Holly