Glad to meet you, Anne; I was diagnosed about 19 months ago. I can still walk, some, with a cane, but can function only around three-to-five hours per day. Lots of the usual pain symptoms shared by all of us. And attacks of contractions and seizures every few days, since the lesion was on the brainstem, on the pons‹whatever that is.
We are glad for your liveliness and dry wit! Please keep posting. You have had an interesting and difficult journey, I think. My mother is now 94 and is very slow and fragile these days. But she too will not go in a nursing home. She says she would rather die in her own house, even by accident, than stay in a nursing home. So, more power to you, Anne! Sincerely, Dalton Dalton H. Garis, Ph.D For now--Associate Professor, Commodity Price Behavior The Petroleum Institute P.O. Box 2533, Umm al Nar Abu Dhabi, United Arab Emirates Office: +971-02-607-5070/5297 Mobile: +971-50-668-5760 New York: (718) 271-2738 From: Anne Shreve <[email protected]> Reply-To: Anne Shreve <[email protected]> Date: Fri, 5 Aug 2011 22:14:41 -0700 (PDT) To: "[email protected]" <[email protected]> Subject: [TMIC] My Story Resent-From: <[email protected]> Resent-Date: Fri, 5 Aug 2011 22:16:11 -0700 Hi everyone, my name is Anne, 58 years young, and live in North Carolina. I was diagnosed with tm in 1971. All the doctors were completely stumped, they had never seen anyone come into the hospital for a bladder dialation procedure and wake up 2 days later completely paralyzed from the waist down. My family had me transferred to another hospital where the dr. there did a mylogram the very next morning. There was just one thing that went wrong. The dr. inserted the dye/contrast however, he forgot all about drawing the dye out after the test was complete. I went on to a full recovery after a 4 month hospital stay. Then in 1993 I noticed that my legs started feeling very heavy and I was having a great deal of pain radiating down my spine, into my hips and continuing down my legs. Oddly enough, I was then working in the very hospital that I had recovered in back in 1971 so one day I went to the medical library and to my surprise every book that I picked up researching tm, had my name in it along with one other gentleman who lived about 8 miles from me. Anyway, after seeing several neurologists, I was told that the leftover dye had attached itself to my spine and had destroyed the myelin (the protective covering) over our nerve endings leading away from the spine. It progressed rapidly and I found myself using a walker, but within just a few months I was in a wheelchair. For the last 12 years my life has consisted of either being in a hospital bed or my power scooter. I don't suppose I will ever walk again. But I continue to live alone, with my son and daughter checking in on me and getting me to my dr. appointments. I probably should be in a nursing home but as long as I can continue to function in the capacity that I am currently in, I just want to stay at home. Please keep me in your prayers and thanks for hearing my story. Take care everyone and God Bless you all. Anne
