hello there

[Guest guest]

Hi everyone,

My first time posting.

Not yet diagnosed, but doc is leaning toward an " inherent error of

metabolism " mentioned mitochondria and ragged red fibers.

I've been sick for two years.

bouts of increasing problems, and some weird ones!

awful fatigue, seeing things negative and postive scotomas, spine

pain, numbness in arms, buringing in limbs, heat sensitivity, air

hunger, incredible muscle pain and spasms, twitching muscles, the

sensation of motion as in my head is like a parade float bobbing up

the avenue, ear ringing, pinprick sensation followed by muscle

jerks, using the wrong word ie: firefly for flashlight, dyslexia,

trouble concentrating, and so on,

all comes in four to five week episodes with some remissions of

feeling fairly normal, although it's very easy to use up all the

day's energy within half an hour of waking up.

My question is....Does any of this sound familiar?

I've have kidney issues for ten years,too. I was going to a nuero

who said it was " too early in the disease to say which one it is "

and later, when pressed to pick one said " O, there are so many to

choose from " and also told me my LP was normal when infact it was

abnormal.....and that was a year ago.

Flunked most of my neuro exams, and feel downright awful most of the

time.

Is this what it's like?

Not much info out there pointing to any hope.....can that be

possible?

Thanks so much for listening.