AMANDA: IT IS OBVIOUS THAT YOU HAVE BEEN PUT THROUGH THE WRINGER. I AM SO SORRY FOR ALL YOU HAVE SUFFERED. I WAS DIAGNOISED WITH TM LAST JUNE. WHEN IT HAPPENED I WAS UNABLE TO MOVE MY LEGS AND HAD NO FEELING. IN THE LAST 11 MONTHS I HAVE COME A LONG, LONG WAY. THE BIGGEST CHANGE HAS BEEN IN THE LAST 2-3 MONTHS. I HAD BEEN ABLE TO USE A WALKER, BUT I FIGURED I WOULD NEVER BE ABLE TO USE A CANE. BUT, ALL OF A SUDDEN I FIND THAT I CAN USE A CANE AND EVEN WALK WITHOUT A WALKER OR CANE. I DO NEED TO GRAB HOLD OF FURNITURE OR THE WALL, BUT I AM ABLE TO WALK SHORT DISTANCES. SO PLEASE DON'T GIVE UP. KEEP UP WITH YOUR THERAPY. I THINK IN MY CASE I WAS FORTUNATELY DISGNOISED IMMEDIATELY AND PUT ON STEROIDS RIGHT AWAY.
EVERYONE HAS SAID THAT IMPROVEMENT COULD HAPPEN WITHIN THE FIRST 2 YEARS, SO WE HAVE A LONG WAY TO GO BEFORE WE REACH THAT POINT. DON'T GIVE UP. WE ARE HERE FOR EACH OTHER SO KEEP US POSTED. PATTI IN WISCONSIN _____ From: "[email protected]" <[email protected]> To: [email protected]; Amanda Diskey <[email protected]> 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 <[email protected]> wrote: > ----- Forwarded Message ---- From: Amanda Diskey <[email protected]> To: [email protected] 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!!
