It really is hard to find anything good in this nasty disease, but one of the
good things to come from this is meeting a group like this. The support and
comfort is tremendous. You also lose the "isolated" feeling of having such a
rare disease. I think the
biggest improvements come in the first 2 years, but that is not usually the
end. New improvements may be a little slower, but
they usually come. Hang in, Amanda. Janice
----- Original Message -----
From: Amanda Diskey
To: pjv1...@chartermi.net ; tmic-list@eskimo.com
Sent: Wednesday, May 06, 2009 9:46 AM
Subject: Re: [TMIC] Fw: my transverse myelitis story
Patti,
Thank you for your post. It is comforting to know that you were still healing
at 9 months. I don't know what will happen, but I have faith in the Lord. I
know some good will come of all this! Have a great day!
amanda
------------------------------------------------------------------------------
From: "pjv1...@chartermi.net" <pjv1...@chartermi.net>
To: tmic-list@eskimo.com; Amanda Diskey <adis...@yahoo.com>
Sent: Wednesday, May 6, 2009 6:38:49 AM
Subject: Re: [TMIC] Fw: my transverse myelitis story
Amanda,
I have chills from reading your story and I think they started when I read
that you can wiggle your toes. I hope you continue to acquire movement and
will keep us up-to-date on your accomplishments. I was still "healing" at nine
months and pray that you are too.
Patti - Michigan
---- Amanda Diskey <adis...@yahoo.com> wrote:
>
----- Forwarded Message ----
From: Amanda Diskey <adis...@yahoo.com>
To: wllo...@tampabay.rr.com
Sent: Tuesday, May 5, 2009 12:33:53 PM
Subject: my transverse myelitis story
Hello, I am Amanda a 30 year old single mother of two awesome kids, and this
is my story about the worst day of my life! I got up that day and helped my
boyfriend clean his daddy's house, we ate lunch when we were finished, and I
went outside for a smoke. While smoking my cigarette I started having chest
pains, and my right arm was hurting so I went back in and laid on the couch.
About an hour later, or maybe more, I decided to go to the ER in case I was
having a heart attack. They took me back immediately, but they could find
nothing wrong with me. After six hours of tests I told them the chest pains
were probably caused by my GERD (acid reflux) because it had happened to me
before, and I wanted to go on home. After I left i noticed one of my knees
buckled every time I took a step, but I didn't think much of it. I went to bed
early cause I just didn't feel good, and I woke up about 11 p.m. because my
back was on fire like it was sunburnt. There was a
> rash across my shoulders and down my spine. I was feeling really bad, and
I told my boyfriend I needed to go back to the hospital. When I went to get out
of bed I almost fell in the floor, but he caught me. I could not stand so he
had to carry me to the car along with both kids. So here we go, I have to stop
on the way and started throwing up over and over again. I finally get to my
second hospital of the day only to run tests until 6 a.m. and finally admitted
to a room where they left me lay for 12 more hours without even monitoring me.
When the neurologist finally came at 6 p.m. I was paralyzed from the shoulders
down. He said that 2 more hours I could have died! He transferred me to ICU at
another hospital and I was 3 points away on blood oxygen levels from being put
on life support. It was 2 days before I was diagnosed with TM at C6-T3 and also
T9-T10. I received 5 days of IVIG, and 10 days of solumedrol, and an antiviral.
I stayed in ICU for 8
> days, 2 days on the neuro floor, and 6 weeks of inpatient rehab. I still
go to therapy now. I got a partial recovery, my arms returned but not so much
my hands. My trunk and legs remain paralyzed but I can wiggle my toes! It has
been 9 months now and who knows what could happen! Maybe they will figure out a
cure one day!!
