recently diagnosed....

[Guest guest]

After eight years of being ill, and being told I was everything from

a hypochondriac to having lupus, I finally found a wonderful doctor

who did a series of tests, 15 viles of blood to be exact. He told

me that I have Mitochondrial disorder and Syndrome

(antiphospholipid syndrome or sticky blood). I guess my mind

couldn't believe I finally got someone who knew what the heck they

were doing, and he asked if I had any questions....and at the time I

didn't...but now I do and unfortunately my doctor is not readily

available to me as he works in a clinic here in Buffalo NY and now I

have questions. Is it true there isnt any perscription drugs out

there to help? He has me on high doses of Vitamins C, E and CoQ10.

I am on baby aspirin and Procardia XL for the APS. Is Mito a

dangerous problem as in life threatening? I do not know how long I

have had this, but I have been ill for some time now and I don't

really know if it was just the or just the Mito or the both

all this time. Can there be cell damage and destruction? I was

told for so long that I had Lupus that I tended to push myself

because I wasn't under any treatment so I thought it wasn't

serious. When I was tested, I had to do about ten minutes of

exercise where I was to make my muscles tired....really feel it as

the doc put it...so I climbed stairs. I felt it and they drew more

blood, and the doc told me that my lactic acid levels were 4 times

higher than they should be. Does that measure the level of

severity in the disease? What does lactic acidosis do to someone

like me? Should I be concerned about my heart? I do not know if I

will be able to make my way back to this area.......kind of stumbled

on it....so if ya have any answers....can you please email them to

me? THANKS!!!

Sue