Fw: Welcome to mitoldies

[Guest guest]

Hello to all. My name is McCombs, I am 29 years old. I am married to

my awesome wife Dawn. I have a 6 year old step son and a 2 year old son. I

am a community outreach missionary with Freedom Baptist Temple here in

Xenia. My wife works at the local hospital and also substitutes school

during the school year at my oldest son's Christian School.

I started having problems about 10 or 12 years ago when I was in High

School. I would get mild to moderate cramping in my hands and feet when I

would work out.

Occasionally over the next few years after that I noticed that I had a sugar

intolerance..ie. I fell asleep a lot after eating a lot of sugar. I told my

family doctor about it and he said that I was borderline hypoglycemic and

had a mild potassium deficiency. I never thought much about it. About five

years ago the cramping got worse and I started having trouble with doing

strenuous activity. I was a part time firefighter and I tended to dehydrate

very rapidly due to extreme sweating and I would collapse a lot. It started

to affect normal activities soon after that.

In the past two years I have a lot of slurred to mumbling speech, can't walk

more than twenty or thirty feet sometimes and get winded, and I get cramps

so bad that I will just ball up and cry. I also started stumbling a lot.

Legs buckling, falling back down when I stand up.

A year and a half ago I finally went to Physical Medicine and Rehab doctor,

and immediately began rigorous testing. He at first suspected possibly MS

but my EMG's and MRI and blood test were coming back relatively normal. For

six months I was treated by him and finally he gave up trying to figure it

out and sent me to a Neurologist. I went to OSU hospital in Columbus.

The neurologist there decided that it was something in my muscles. Muscular

Dystrophy was ruled out. My Aunt Jannette in Texas talked to me and said

she was running through the same symptoms and problems, except she was

having seizures. She had been back and forth with her Neurologists on

getting a diagnosis. She told me of my cousin Joni's son having a mito

cytopathy disorder. I called Joni immediately and she told me everything

that was happening with her son. Joni's mom, Donna had passed away 6 months

before from complications of ALS (Lou Gehrig's Disease). We talked about it

possibly being something genetic. My insurance won't cover a genetic test.

But through looking through all the medical issues with my Aunts Donna and

Janette, and my cousin Joni's son, my Doctor is now strongly leaning towards

a Mito Disorder in me also. I am finally being sent for a muscle biopsy in

the next few weeks. I just pray that it will yield something so that I can

begin the right treatments.

The hardest thing for me is I have no endurance with anything. Normal

activities like folding the laundry and doing the dishes can bring painful

cramps so bad that I have to sit down for 15 minutes or so. I can't even

help teach my 6 year old how to ride his bike.

I leave it all in God's hands. It is even more heart breaking to see so

many young children with their lives cut short because of this problem.

I also pray that there is a cure found sometime soon.

I want to thank you for allowing me to join . I need a strong

support group of friends that are facing the same thing that I am. My

friends and family just don't understand because they look at my age and see

how I was a few years ago and they just wonder what happened.

Thank you,

McCombs

Xenia, Ohio

2 Corinthians 1:3-4