Re: Fw: Welcome to mitoldies

[Guest guest]

,

You have come to a good place. I'm sure others will respond to your

story (many are away at the mito conference right now) but just

wanted to make a few comments.

First, II Cor 1:3-4 is one of the passages I love and live by.

Comforting others with the comfort we have received is one of the

ways to " redeem " the disease, I believe. My contacts with other

patients over the years have added incredible richness to my life.

Second, you are about the age of my son. He is 30, and he also has

mito as I do, though he is doing well now and working full time. We

were able to get an initial diagnosis for him when he was 9, and

that has made all the difference in his productive life. Treatment

with Carnitor and riboflavin helped tremendously, as did taking him

out of PE. We are so thankful for the wise pediatrician who was

willing to intervene at school.

Your history sounds so familiar, and it breaks my heart to hear yet

another story from a young husband and father. I DO hope your biopsy

is handled by one of the mito experts so that one biopsy will be

sufficient to provide answers. Some of us had several biopsies

before we got answers because the right testing was not done on the

tissue. Since you are in Ohio, perhaps your doctors are in touch

with Dr. Bruce Cohen at Cleveland Clinic? He is one of the best for

mito disorders.

On a personal note, the word " Ohio " evokes wonderful memories of

family reunions with my grandparents, aunts, uncles and cousins--

summer picnics under shady trees, lots of good food, love and

laughter. I live in Kansas, but in my world, the second best state

in the union is Ohio!

Welcome to Mitoldies. You will surely find friends here.

Take care,

Barbara

>

>

>

> 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

>

>

>

>

>