Possible adult mito?

[Guest guest]

Hi, I just wanted to introduce myself as I will be lurking for

awhile, and say thank you to S. for recomending this group.

I currently do not have a diagnosis, but my PCP is now looking into

Mito issues. My name is a and I live in Kansas. I am 30

years old and have a 7 year old son. I have been dealing with a

multitude of symptoms since around November of 2003. My symptoms

became severe enough to interfere with my daily life in April of

2004. I had been going back to college FT but was only able to

complete 3 course hours out of 10 in the fall of 04. I have been

unable to hold a job since.

There is some evidence of mito disorders on both sides of the family.

I have a maternal uncle with Parkinsons, and all of my maternal

aunts/uncles have mitral valve prolapse or syndrome, it was severe

enough in one of my uncles that his valve had to be replaced. My

father has myasthenia gravis. My mother and her sister have had

similar symptoms to mine although seem to interfere less with their

daily living. I should also mention I have had asthma since childhood

and during my childhood had severe food allergies and was lactose

intolerant. I have not had problems (to my knowledge) with food

allergies since I was about 10.

So far, I have been diagnosed with internuclear ophthalmoplegia of

the left eye, optic atrophy, left positive afferent pupillary defect,

and left optic disc pallor temporally. I had abnormal results on VEP

and visual field testing. I have double vision, most noticeable when

viewing light against dark, and I have episodes of blurred vision.

My ophthamologist believes I have occular migranes, and as of last

week my eyes are not creating enough tears.

I suffer from fatigue, more often than not it is debilitating, yet I

have a terrible time falling asleep and staying asleep. I have

visable muscle spasms and twitching which worsens after activity and

includes a burning sensation, I have some myclonic activity. I

believe I have IBS do to frequent cyclic bouts of dirrhea, I have had

bouts of incoordination resulting in falls, I have difficulty speaking

(slurring and misuse of words), I have difficulty comprehending

simple written directions, I have a host of sensory symptoms

(pins/needles, electric shocks, stabbing pains), and I have no

patellar or achilles reflex in my right leg. The last 6 weeks or so

I have been waking up coughing and gagging, almost like inhaling a

piece of dust. I also have tiny red dots (they are not raised) on

the top of my left hand. They do not itch and you can't feel them.

I have no idea what those are about. Most of my symptoms come and go,

but I always have the vision problems, muscle spasms,and fatigue.

The others come and go at random. Sometime lasting for short

periods, sometimes hanging around for weeks.

I have been tested for the obvious, diabetes, thyroid, hormone,

arthritis, fibro, chronic fatigue, lupus, syphillis, multiple

sclerosis, etc. all negative. I have had the basic CBC, CPK, and

Metabolic profile. The only thing that showed was I am borderline

malnourished. A cross-reactivity test for West Nile last May showed

elevated serum IgG levels, but none of the doctors I have seen

believe anything is related to West Nile.

I switched PCP's in January because my last one chalked my symptoms

up to being mental after my MS tests came back normal. My current

PCP is wonderful, and has been willing to research or consider

anything reasonable I bring to him. I am a little concerned because

I will be moving to another town in June, and am afraid to have to

start all over. My current PCP is reasearching MITO but told me he

is clueless about it (his own words). I was wondering if this sounds

like a mito issue, and if anyone has any ideas what sort

of testing should be done or which particular disorders/disease

should my doctor be looking at?

Any thoughts greatly appreciated!

a