How important is it to pursue diagnosis

[Guest guest]

Hello, it is me again. I am having more symptoms recently,

likely due to more home and work stressors.

I have never been formally diagnosed; " sounds like mito "

from primary care doc, my own research, and McMaster

university neuromuscular unit saying " you have signs of

neuromuscular disease, with limb-girdle muscle signs and

exercise intolerance " .

I have never had a biopsy because the three times i was

scheduled i was bumped by emergencies, waited all day in

two cases and was called to cancel in a third.

I have had no real signs in my blood work of lactic acid

buildup, etc, even after some exercise. Mind you, in all

cases it appeared the lab had to call the doc for

clarification for what the blood was being taken for, and i

have little confidence they acually got it right (three

times i had bloodwork done for muscle disease specifically,

and three times it was over two hours of the technicians

calling around for clearification - once nearly 4 hours --)

I am writing this for a few reasons ...

My vision is bothering me, suddenly, i have days where it

seems " fogged " or slightly unfocussed. Is this because i

look at a computer screen all day for work? I have a great

monitor, i can use a screen magnifier, and i have never had

this problem before .... what are the symptomos of eye

probs with mito?

I have exercise intolerance to a huge degree, can no longer

walk any distances, use a motorized chair for any distance.

But is it possible i have " something else " that the docs

aren't finding? I thought i had been tested for

" everything " ...

Most importantly, SHOULD I CONTINUE TO PURSUE DIAGNOSIS???

I am sick and tired of the medical game ... had a primary

care doc say, " why do you need to know? " like i was some

petulant toddler wanting a sucker and being greedy. I tell

people i have mito because it seems most likely and because

that's what my latest doc has said she thinks it is (family

doc, tho) ... but i know that all resources geared towards

mito are firmly fixed on the care of the young urgent cases

and i'm never going to get the time unless i make myself

very pushy.

Why does it matter that i know? I do know that in Canada, I

would be able to access the Muscular Dystrophy Association

support system, and i guess that would be my real

motivator.

Do i have Mito? Am i just " weird " ? Is it getting worse ..

am i going to be unable to see the computer screen in a

couple of years?

Sigh ... So many questions, and the easiest thing is to do

what i have been doing for the past couple of years ...

just wait and see.

Thank you for listening, and i await your wisdom ... I have

learned a ton from this group ...

--

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Kelta Vineyard

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