Qs re: Suspected mito and Clinical Dx of mito

[Guest guest]

As some of you know, at the moment I'm a " suspected mito " person, or,

as my neurogeneticist put it, " highly likely. " I will get my biopsy

results in 2 weeks. I'm wondering how I might work with negative

results if my doctor still believes I have mito anyway and wants to

treat me as if I do. This possibility has raised a few questions for

me and I wonder if some of you who have " suspected mito " or a

" clinical diagnosis " of mito could respond to them:

Do you feel that it makes sense to act as if you have mito even if you

are uncertain? (E.g. by taking the mito cocktail, avoiding certain

meds and anesthesias, etc.)

Do you feel in your heart of hearts that you have mito even though lab

evidence is inconclusive?

Does the lack of an absolutely definitive diagnosis pose problems when

dealing with doctors, non-mito specialists, and/or emergency room

visits? If so, how do you handle that?

Does the lack of an absolutely definitive diagnosis create social

difficulties--e.g. with friends or family not taking you seriously or

doubting you?

What do you tell people who you meet socially when they ask, " What is

your illness? "

I'd really appreciate your responses. Perhaps it will help me be more

psychologically prepared for whatever I wind up finding out in 2 weeks.

Best to all,

Shayna