Welcome Amanda. Boy, reading your TM story - well I can't believe what you have been through. What an awful experience. But we are so glad you found us. You'll find we are a very supportive bunch. I feel like Patti - chills ran down my spine when I read that you could wiggle your toes! Please hang in there, never give up. I'm so glad that you're still having physical therapy. Can never have too much of that. Hey, I have had TM for 7 years now and have had to self cath the entire time because I can't completely empty on my own, and out of the blue I am now only having to cath when I get up in the morning and before going to bed at night! And my urologist who specializes in neurological damage said "all day for the rest of my life" - I think we should focus on what we're still going to gain, rather than put so much emphasis on a "time line" Many of us have continued to improve over the years, and I'm hoping and praying that you do as well.
Good to have you with us. Keep posting so we know how you're doing. Linda - Eagle, ID ----- Original Message ----- From: Amanda Diskey<mailto:adis...@yahoo.com> To: Janice<mailto:jan...@centurytel.net> ; tmic-list@eskimo.com<mailto:tmic-list@eskimo.com> Sent: Wednesday, May 06, 2009 9:31 AM Subject: Re: [TMIC] Fw: my transverse myelitis story hey janice! thank you too for your support i am hanging in here and trying to wait patiently! amanda ------------------------------------------------------------------------------ From: Janice <jan...@centurytel.net<mailto:jan...@centurytel.net>> To: Amanda Diskey <adis...@yahoo.com<mailto:adis...@yahoo.com>>; pjv1...@chartermi.net<mailto:pjv1...@chartermi.net>; tmic-list@eskimo.com<mailto:tmic-list@eskimo.com> Sent: Wednesday, May 6, 2009 10:19:38 AM Subject: Re: [TMIC] Fw: my transverse myelitis story 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<mailto:adis...@yahoo.com> To: pjv1...@chartermi.net<mailto:pjv1...@chartermi.net> ; tmic-list@eskimo.com<mailto: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<mailto:pjv1...@chartermi.net>" <pjv1...@chartermi.net<mailto:pjv1...@chartermi.net>> To: tmic-list@eskimo.com<mailto:tmic-list@eskimo.com>; Amanda Diskey <adis...@yahoo.com<mailto: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<mailto:adis...@yahoo.com>> wrote: > ----- Forwarded Message ---- From: Amanda Diskey <adis...@yahoo.com<mailto:adis...@yahoo.com>> To: wllo...@tampabay.rr.com<mailto: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!!
