Has anyone had this test done?

[Guest guest]

Now that I am more confident about the biopsy I'm having on Nov. 7,

I'm concerned about another test I'm getting on Nov. 3. I don't

know the name of the test. They will put a catheter through my neck

into an artery that goes down to my heart. There will be a smaller

line in my wrist. Then, with catheters in place, I will exercise on

a bike for 10 minutes. As I understand it, the purpose of the test

is to measure how much oxygen gets to my muscles. I was told that

it will not influence the treatments my mito doc prescribes for me,

but it will be a factor in the diagnosis.

Have any of you had this test done? If so, how did it go for you?

Apparently, it's a bit riskier than a biopsy. There's a small

chance that they could accidentally hit my lung which would make it

collapse and land me in the hospital for a day or two. But I think

the chance is really small. I'm nervous because it's so different

from any other procedure I've had.

My primary care doc (who is great) would prefer it if I took things

one step at a time—i.e. biopsy first, see what the results are, and

then, if it still seems useful, do the exercise test. However, he

said he would totally understand if I simply wanted to get the whole

thing over with and get as much information as soon as possible. He

says there's no right decision and it's up to me.

I would like to get it over with. But I'm nervous about it and I

wonder if I am letting impatience guide my choices—which isn't

necessarily such a good idea. I would feel better if I heard from

some of you that you had this test done, that it went OK, and that

you thought it was worth it. Alternatively, if you think this test

is overkill at this time, I would like to know that as well. In the

few short weeks that I've been in this group, I've come to have a

lot of respect for how you are all dealing with this disease and for

your knowledge.

If you don't mind my adding one other issue to an already-long note,

I've had to go off my carnitor in order to take these tests. If I

get them both done now, I can go back on the carnitor and stay on

it. If I decide to do the exercise test at a later date, I will

have to go off it for a month again because the carnitor can give

false results. Maybe going off for another month is not a big

deal. But I like the carnitor. It helps.

Thanks so much to anyone who has made it through this long note!

Best wishes to all,

Shayna