Hello

[Guest guest]

Welcome Kathleen,

We are neighbors! In the Mito world anyway. I live in Santa .

Just a couple of hours west. I do not yet have a diagnosis. I know

what you mean about a lack of specialists here. I have been to the

MD clinic in San Francisco. I also went to see Dr. Enns at

Stanford. The people at the MD clinic did not know much about

mito. Dr. Enns is pretty much a researcher. I did not " fit " any of

the defined categories so he was unwilling to look any further. I

have mild pitosis, but not enough for anyone to address. I just

keep being asked if I am sleepy ). I have periodic muscle weakness

which is becoming progressive. I have a form of hypothyroidism-

Thyroid hormone resistence. That means I make (barely) enough

hormone to be considered normal, but my body does not utilize it

efficiently. I also have complete heart block. I have been 100%

dependent on a pacer for the past 24 years. I also have autonomic

issues. I have been diagnosed with " neurally mediated sycope " . The

list goes on and on. I would like to get back to Atlanta to see Dr.

Schoffner, but my insurance company is not co-operating. My

grandaughter died 2 years ago. She was almost 3. In her autopsey

they found mitochondrial proliferation. But everyone keeps looking

for other reasons for this string of symptoms. Instead of putting

the puzzle together and relizing that they could all have a common

cause.

You will find people who can point you in the right direction and

give you support as you make this difficult journey. I am glad you

found us.

Joanne