Response to Sunny; Thoughts for Bob, our Newest Member

[Guest guest]

Dear Sunny,

Thanks for your thoughts. Of its nature, mito is a very serpentine

disorder. It requires geat patience, as it winds its way throughout

one's body. And the " story " of mito is different for each person, and

it's usually a long, complicated story at that.

I welcome Bob, our newest member, and just counsel taking this one day

at a time.

Sorry you might have to be here, Bob, but you have found a treasure

trove of wonderful people.

I'd estimate that it has taken most of us 10 years to get a diagnosis,

but perhaps that is improving because medical knowledge is increasing.

As I have related before, I hit some brick walls, some dead ends, a

doctor who literally yelled at me, and said it was all from stress.

Very vivid in my mind is the instance in a mall at Christmastime when a

great peace came over me. Christmas is always a very busy time,

especially because my daughters' birthdays are on Dec. 22 and Dec. 26.

Because of many knee surgeries, I have tried to use malls for safe

walking, away from the long months of snow and ice here in the mountains

of NE Pennsylvania.

I realized that day that my endurance had declined by 80 or 90 %. I was

not the same person. I realized that I knew my own body better than any

MD or PhD ever could or would. I gained a great sense of peace, and of

patience. I had the great advantage of having an endocrinologist, whom

other doctors considered brilliant, since 1975. He would listen

non-judgmentally as I would return with problem upon problem. He was not

afraid to say that he did not know. In the 80's he suggested the Mayo

Clinic, which I am glad I did not do, having read here of the less than

stellar experiences of some Mitoldies.

But when I started to go deaf in 1998, that's when he put the last piece

of the puzzle together. He said that I probably had mitochondrial

disease and directed me to the UMDF. I urge all new members, especially

to read that website and the MDA website.

Tell us where you are geographically, and sometimes there may be a good

" mito doc " within striking distance.

Take care, everyone.

Sincerely,

S.