awaiting diagnosis

[Guest guest]

Hi Chica,

I am 45 years old. I have had symptoms all of my life. But like

others on this list I never knew what was normal since I had never

known normal. I have autonomic problems since I was a child. My

blood pressure would drop and I would faint. I remember trying to

keep up with other people and being frustrated that I couldn't. I

figured that I was out of shape. But it always seemed that the

regular rules never applied to me. They always said " exercise and

you will get stronger " . Well just the opposite happened to me.

After I had my first child (During which my labor wouln't progress

either Laurie) Is when I started having worse problems. I would

wake up gasping for air and I was exhausted all of the time. When

was 1 year old I almost died. My heart stopped beating. I

had been telling my doctors for some time that something was not

right with my heart, but well you all know the story. They patted

me on my head and told me that I would be all right. It turns out

that when I went to sleep my heart rate was plumeting (sic). They

finally measured it at 18 beats per minute. Of course I got a pacer

and have been 100% dependent on it since then. That was 23 years

ago. About 15 years ago I started having muscle weakness in my

legs. It comes and goes but has been progressing steadily since

then. I still don't have a diagnosis yet, but my grandaughter died

last year of cardiomyopathy and her muscle biopsy showed

mitochondrial proliferation and 'strange' muscle fibers. I have

lately had trouble with my breathing. I have a lot of hypnoapneas

lately both asleep and awake. Anyway I hope that helps. Welcome to

the group!

Joanne