Biopsy Results/Dx?--Long!

[Guest guest]

Hello All,

I got my biopsy results yesterday along with a 1 1/2 hour discussion

about what it all means.

The biopsy was normal. For complex I and III my scores were the lowest

possible for the normal range. The lab is running those tests again on

a saved piece of tissue but the 2nd results are likely to be

the same.

If I want to, I can get a fresh biopsy and/or a pulmonary level 3 test

(not sure I got that name right) which could provide more info and a

more conclusive dx. But, with more conclusive evidence, the treatments

my doc would offer would only be a bit different from what she's

offering now so at the moment I feel uninclined to get more testing.

We talked at length about whether she thought I had mito or not. She

was absolutely lovely--very honest and real regarding her own

conflicts about how to think about situations like mine. On the one

hand, she doesn't want people to go around believing they have this

illness if they might not (since it has serious implications). On the

other hand, she doesn't want people not to get the medical help they

might need if there's a chance they do have it. She talked about how

little they really know. And she knows *a lot* as mito doctors go,

giving me substantive scientific info wherever applicable and tales of

what her cadre of mito-doc peers debate amongst themselves.

I think there's a lot of flexibility here for me to view this as I

want to. Both she and I think it's prudent for me to be on the mito

cocktail and I left with a full list of vitamins, cofactors, and

suggested doses. She also gave me written instructions about avoiding

metabolic stress and a protocol for emergency situations if I want to

use it. She said some ER docs get pissed when you have opinions about

your own care while others are receptive.

But do I have mito? I'm already on Medicaid, Medicare, and SSDI with

the diagnosis I have so I don't need a dx for that purpose. And, she

said Medicaid in Massachusetts isn't receptive to clinical diagnoses

of mito anyway. I asked if it would be honest to tell Epic that I had

mito if I wanted to buy CoQ10 from them and get a discount. She

said they would probably understand and support the " clinical dx "

phrase. Will I tell myself I have mito? I'm not sure yet, but I doubt

it. Currently, I am telling myself that it's possible I have mito so I

should take reasonable precautions. Also, if new developments arise, I

can choose to see her again or take more tests at any time. But for

now, I actually think uncertainty might be the best option.

I know this is a long letter; I hope you don't mind. I'm working out

my feelings here I guess. I want to explain why I think uncertainty,

with all its difficulties, might work for me.

First of all, it feels honest in my case. Second, I'm used to it. I

had symptoms since I was eight, was in a wheelchair by the age of 16,

and didn't get my first dx until I was 19. Even then there were

some questions about it. Imagine that! A teenager in a wheelchair who

didn't even know why. The shame was so intense. In my twenties, the

doctors accepted the RSD dx more though it never accounted for all my

symptoms. I learned to live with the fact that doctors don't know

everything and that I have something that's not understood. I learned

to sort out doctors who couldn't deal with uncertainty (and who would

therefore say it's all in my head) from doctors who could support me

through the uncertainty. I got over the shame. I found friends who

supported me no matter what.

In my thirties my symptoms changed dramatically. The RSD lessened but

the muscular issues got much more intense and I was suddenly bedridden

for 3 years. No one knew why. It was scary not to have an explanation

and not to have any way of guessing what was coming down the pike but

I learned to open up to life's utter unpredicability. Now, my neuro

pain and muscular problems are much less acute but I'm still

significantly disabled. I think I would prefer at this point to allow

myself to be a medical question mark. I know what some of the

possibilities are; knowing more about mito is empowering; I can take

appropriate precautions and if something comes up that seems like a

mito-related problem, I know who to go to. But I'm not convinced that

I have it. All I know is that my symptoms are what they are (to sort

of mangle a phrase from RH). It's tough to not know what causes them

or what the future holds, but even if I had a definite dx of mito, I

still wouldn't know what the future holds. I feel able to live with

the uncertainty and grateful for the loving friends in my life and the

supportive physicians who open to the unknowns with me.

I wonder how much I will stay involved with this group. You have

helped me so much. You know how grateful I am to you. And there is

still a suspicion of mito for me so perhaps lurking around here will

help. I'm still " digesting " all of this, if you can pardon the metaphor.

Anyway, that's the scoop. Thanks for " listening. "

Hugs all around,

Shayna