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04-20-2009, 07:06 PM | #1 | ||
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Sorry for the long post - thought some may appreciate the update on PML #5 patient from her husband who should be sainted as he's just gone through this PML experience, setting up/preparing for her rehabilitation, dealing with uncovered medical expenses, and he's worried about making sure other MS patients on Tysabri receive proper preventative measures. My important takeaway is that she had new symptoms which she wrote off as MS. TYsabri patients need to be cognizant of new sypmtoms and suspect PML first until confirmed as just new MS symptoms.
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04-20-2009, 10:06 PM | #2 | |||
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Grand Magnate
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Infusion #1 done and history, no problems, no need for Benedryl or Epinephrine, drove home in nasty Twin Cities road construction traffic, stopped at Lil' Oscars for dinner on the way home..Everything went great (yay!)..Love you, too, SK!
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04-21-2009, 05:39 PM | #3 | |||
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In Remembrance
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Yeaaaaaaa, Polar, Congrats...I hope this is your magic bullet..
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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04-21-2009, 10:13 PM | #4 | |||
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Grand Magnate
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Thanks, Sal..I'm keeping a positive attitude. It went so well yesterday, I'm hoping it keeps on going that well..Felt fine today, didn't poop out till later in the afternoon..That's pretty good for me. I don't know if it's just the high from finally getting this done, or if it's the Ty, but I'll take it anyway!
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04-22-2009, 06:24 PM | #5 | ||
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Just got back from my 33rd infusion YEA Ty!! Holding my improvements, progression halted and good MRIs.
Linda |
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"Thanks for this!" says: | ewizabeth (04-23-2009), Natalie8 (04-22-2009), PolarExpress (04-22-2009), Riverwild (04-22-2009), weegot5kiz (04-24-2009) |
04-24-2009, 10:12 AM | #6 | ||
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I am new to this forum. I am here because I need some advice from other patients. I was diagnosed with MS in October of 1993. I still work full-time, and most people don't even know I have it, but I am having some problems that are really starting to affect my quality of life. My two major problems are double vision, and a weak right leg (I can walk about half a mile before it gives out). I have had double vision for 4 years now, and my only relief from it is prism glasses, but apparently if you wear those too long, the eyes shift and adapt, causing some additional problems, so I wear them as little as possible. The double vision has become worse lately, though, and I am now considering looking into eye surgery, or getting on Tysabri (I have been on everything else that's out there, and am currently on Rebif). I can't find enough information, though, that will let me know if Tysabri can help the double vision to go away. Did any Tysabri users on here have double vision before starting the treatment and, if so, did the double vision problem improve at all after starting the treatment? Thanks for any help you can provide!
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"Thanks for this!" says: | Grammie 2 3 (04-24-2009), Riverwild (04-24-2009) |
04-24-2009, 01:13 PM | #7 | ||
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04-24-2009, 02:25 PM | #9 | |||
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Magnate
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After 6 months of Tysabri I had an eye exam and my vision was back to pre-diagnosis level. The opthalmologist was amazed and asked what I was on for treatment. It's been 25 infusions now and my vision has remained at pre-diagnosis level. Tysabri and vision: http://nationalmssociety.org/news/ne...x.aspx?nid=134
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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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04-24-2009, 02:27 PM | #10 | |||
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Magnate
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#25 down!
No problems, no concerns. (i'm sooooo boring... )
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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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"Thanks for this!" says: |
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