New member from Arkansas

[Guest guest]

Hi everyone,

I will give a brief outline of my disease - MERRF

I first had problems in the early 1980s. They finally did a lung

biopsy then and disagnosed it as Sarcoidosis. I came close to dying

then but took predisone and had a lot of people praying for me and

recovered.

My next major bout came in 1991. I became very sick, had pneumonia

and a collapsed lung. My doctor sent me to Denver and they

diagnosed me with a motor neuron disease of some type and told me to

go home and get a wheelchair. I refused to give up and managed to

get to where I could go back to work.

My last bout started in 1998. I started getting weaker and had a

lot of problems. A local neurologist sent me to St Louis to the

Jewish Hospital who have a major neurolgist center. They did

a muscle biopsy and diagnosed MERRF. They kept telling me I needed

to quit work to be able to function. I finally did quit in 2000

after 30 years with a good company who worked around my illness. I

was the Engineering Manager when I finally quit. I was 56 then. I

am now on oxygen at night and when I do anything strenous.

I have good days and bad days. If I overdo it, I will have several

bad days. I fouund out that stress also makes it worse. I have a

loving wife, 3 supportive children and two wonderful

granddaughters. I am drawing disability and between it and my IRA

am making it. We don't always get to do all we want but manage. I

don't know what the future holds but am thankful for being able to

get around.

Hope this wasn;t too long. I have been reading the emails and posts

and the make me realize other people also go through this.

Jim