ESR Dolores - Sorry - This transmitted directly to me but was meant for the list

[Guest guest]

From: Dolores

Sent: Wednesday, March 02, 2005 1:09 PM

To:

Subject: Re: ESR Dolores

My worst fear is that died of this undiagnosed/unheard of genetic

disease. I had never heard the word until December when Dr. Baker called me

on the phone and told me that he had been doing some in-depth research into

my 31 years of case history on me and he wanted me to change neurologists.

I told him fine, find me a new doctor, make me an appt and I will be there.

He did just that and Dr. Welch agreed with Dr. Baker and started pulling all

of my Parkinsons meds, for which I am veary thankful as I have ended up in

ER twice fron the Parkinsons meds. The last trip was by ambulance and

wasn't a fun trip, I called a friend from church and left a message on her

machine that when she got the message to please call me as I was ill and I

would leave the front door open so she could get in if she needed to. She

didn't even try to call and when she got here I was in respiratory distress,

she called 911 and they thought I was going to have a heart attack before

they could get me to

the hospital, but I made it again. The first time my son (Bill) took me by

car and he wasn't sure if he was going to be able to get me from the car to

the ER as I was shaking so badly. He asked me if I thought I was trying to

have a seizure and I told him beats me as I have always been asleep when I

had one. The ER doctor thought I was having a stroke? The doctors ar

pulling 's records to see if they can find something/anything that

points to anything unusual as they were baffled as to what to put on the

death certificate? What a disaster and what a waste of a young man who had

so much to live for. He took ill so suddenly and left this earth just as

suddenly. I couldn't believe he could go so fast. Soooooo Sad!! He was my

helper so I lost my child, my friend and my helper all at the same time. He

never regained consciousness after he got to the hospital. He never even

knew that I was there with him to the very end. Just Mom and !!!

bionicgirl_bionic pjcrook@...> wrote:

Dolores

I am so sorry to hear about your son. I do understand how you

feel. I lost my grandaugher last April. We are still trying to

determine if it was mitochondrial disease. She had major heart

defects, but at her autopsey they found mitochondrial proliferation.

Hang in there with those drs. I know they can be a challenge.

Joanne

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