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#5 | |||
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Magnate
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Hi Kebsa!
Sorry to hear things are so bad lately! You've gotten a lot of good advice here. I just want to add my story to the mix. I was diagnosed in Sept. 2004 after a bout of ON. My neuro at the time talked to me about Tysabri in Nov of 04. I wanted to do my own homework on it before deciding yes or no, since this was all new to me. I read everything I could, spoke with everyone I could find who was on it, (including Av8rgirl, who was just a name on a board at that time!) and made my decision to start Tysabri while in my second relapse since diagnosis. I was scheduled to begin in March of 05 and Tysabri was taken off the market two weeks before my infusion. My neuro believed that Tysabri would be back and advised that I start on another DMD while waiting. I was in another relapse and decided to do Copaxone until Tysabri came back. I was relapsing regularly, would come out of one relapse and then BAM...off again. I gave the Copaxone a good run, for 18 months. It didn't work. In the meantime Tysabri was returned to market. Just before that my neuro moved away. I had to search for another neuro, no one would prescribe Tysabri. I went to three new neuros, all against my choice of medication. Finally a new neuro moved into my old neuro's space just 20 miles away. I went to make an appointment, and told the nurse to give him a piece of paper, with one word written on it. TYSABRI. I told her to call me and cancel the appointment if he wasn't willing to prescribe MY CHOICE of treatment. Before I got back home,I had a message from the doc. He said...come in and we will talk. I went in and explained my reasons for wanting the drug, and he prescribed it. I go for my 10th infusion on the 31st. My last course of steroids was in May of 07, three weeks before my first infusion. Since that time my MRI is clean, no new lesions, no enhancing lesions, and large lesions seen on starting MRI are reduced in size or gone. I had a complete vision checkup with all the tests. My opthalmologist asked what drug I was on after the exams. I told him and he said. " I have NEVER seen a complete recovery from the damage you had. Your optic nerve is a healthy pink with no visible damage, the scotoma you had is gone, your eye muscles are under your full control, and you don't even get new glasses! Prescription from 2003 is in effect" Not only did Tysabri stop the serial relapses COLD, but it obviously gave my body a chance to repair previous damage. I haven't had a single relapse since I started. For me, MS was coming on fast and furious, and now, it's stopped in it's tracks. I still have fatigue and spasticity, but the fatigue is half or less what it was previous to Tysabri. I went from 300-400 mg day of Provigil to 100-200 mg when I need it The spasticity is under control with Baclofen and Tizanidine, and I often forget to take the Baclofen and don't notice until I remember the next dose. I am working full time. I am on an exercise and PT program to get back what I lost in muscle and gained in weight post diagnosis. I firmly believe I will go back to my previous career, one I loved and worked for 20 years before being diagnosed with MS, by this spring. There is hope out there! Tysabri may not work for everyone in the same way, but it works for me!
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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