Re: Marla to Dolores

[Guest guest]

Marla,

let me add my welcome as well. although i don't know whether i

qualify as officially part of the group or not. i am still awaiting a

diagnosis as well. the support and encourgaement from this group has

been great. but the information i get is almost as valuable. one of

the most useful things i have learned from this group and now from my

own experience is how useful it is to have a medical professional on

your side. i have found that i needed just one doc who whould take

the time to listen to me, answer my questions and then refer me when

she didn't have answers. the ability to listen and the attitude to

care are worth more than any specialized training. so i

" re-discovered " a family doc in our local pratice who listed to me in

the past and made her my pcp. now i am waiting (and pushing) for the

specialists to forward all my test results to her. then she will

refer me to the local MDA clinic and maybe even Mayo and/or Cleveland

for biopsy or biopsies, depending on our HMO. i have said a prayer

for you just now (hope you don't mind) asking that you find or

continue to use that one professional who will care for and work with you.

diagnosis and its implications are less of a problem for me, as i am

an older man with grown children, adequate life insurance and symptoms

that don't point to anything inherited. but i don't listen to those

who tell me i may never know what i have or that it isn't important to

know. a dx will give me an indication of what possible treatments

might work and what the prognisis has been for people with the same or

a similar dx. these are my thoughts on this, since you asked.

kent

> Thanks for the welome. I hope my primary doctor will be as vigilant

> as your ortho doc. I'm

> feeling a little overwhelmed at the moment in trying to read all I

> can and make the right decisions. I hope to get to know all of you

> soon.

> I saw the MDA doc who told me he is certain that I do

> have

> > Mito, but won't give me the offical dx without a biopsy. He says

> the

> > prognosis is the same for me, if I know which kind or not. Is

> leaving

> > the biopsy decision up to me. I really want a name for this, but

> not

> > sure it's worth the pain. I had a biospy done a few yrs back, but

> it

> > wasn't done correctly. He also said they may not know even after

> the

> > biopsy. Would like any thoughts on this. I'm so happy to have

> found a

> > support group, I don't know anyone else trying to cope with this

> kind

> > of disease. Hope to get to know you all soon.