Wow! If that (Blackberry) isn't encouragement, I don't know what is. Of course, we are all hit differently, but alike, with this nasty disease, but this is amazing. You notice he had improvement well AFTER the 2-year mark. Janice ----- Original Message ----- From: Patricia Cooley To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Thursday, May 07, 2009 9:23 AM Subject: RE: [TMIC] Fw: my transverse myelitis story
I AM HAPPY TO FORWARD THIS ON AND WAS GLAD TO READ YOUR STORY. ONE THING FOR SURE, WE NEED HOPE AND MUST WORK FOR IMPROVEMENT NO MATTER HOW LONG IT TAKES. I AM GLAD TO HEAR HOW FAR YOU HAVE COME. I DIDN'T JOG BEFORE SO WILL BE HAPPY TO BE ABLE TO WALK BETTER AND FOR LONGER DISTANCES. PATTI IN WISCONSIN From: rj_ran...@yahoo.com [mailto:rj_ran...@yahoo.com] Sent: Thursday, May 07, 2009 6:20 AM To: Patricia Cooley Subject: Re: [TMIC] Fw: my transverse myelitis story Patti forward this to group. I'm on blackberry. I lost rgt ledg in o5 and both doc and neuro said no chance for rght and loss in lft was just a matter of time. Said PT wouldn't help. I went anyway. Took 3 years of work. I know walk nd jog. Can't run yet. I lost bladder and had to self cath. I got bladder back too but had been told no way possible. My diag was MS in O5. Changed to TM in O6 and back to MS last year. They don't know for sure and can't get it perfect. It was a nightmare and frustrating and HaRD work -painfull-but it paid off. Sent from my Verizon Wireless BlackBerry ------------------------------------------------------------------------------ From: "Patricia Cooley" Date: Wed, 6 May 2009 10:37:43 -0500 To: 'Amanda Diskey'<adis...@yahoo.com>; <pjv1...@chartermi.net>; <tmic-list@eskimo.com> Subject: RE: [TMIC] Fw: my transverse myelitis story 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: "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!!
