Thank you so much for sharing with us, Amanda. You have really had a hard time but it sounds like you have had some improvements. With PT/OT and sheer determination, I think you can improve even more, truly I do! I went from where you are to being able to walk and get around on my own at home, thanks to the walls and furniture but by gosh, I walk! I still can't 'feel' like I did and do have spasms and pain but it is all so much better. Again, thank you, and we are all here to help you any way we possibly can! Jeanne
-------Original Message------- From: Amanda Diskey Date: 5/5/2009 9:06:58 PM To: [email protected] Subject: [TMIC] Fw: my transverse myelitis story ----- 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!!
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