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04-25-2011, 11:56 AM | #121 | ||
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04-25-2011, 01:51 PM | #122 | |||
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Here are some more detailed statistics on PML risk released by Biogen at the AAN.
http://www.medpagetoday.com/MeetingCoverage/AAN/25972 Linda, I think this might answer your question about risk with 2 out of 3 factors.
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"Thanks for this!" says: | DizzyLizzy (05-02-2011), Grammie 2 3 (04-26-2011), Riverwild (04-26-2011), SallyC (05-06-2011), shayna (04-28-2011) |
04-25-2011, 08:08 PM | #123 | |||
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Yay!!!!
I am so happy to hear that news! I know how much this was weighing on your mind. Pop the cork and cheers! Now, did you st and wonder how the heck you DIDN'T test positive? I know when I got my results I was stunned because I have lived in many places and played in the dirt in other countries and swam in their water and eaten their food and played with their children and I figured if anyone would be exposed to some strange bug, it would be me. Now I wonder if there's something in some people's immune system that helps them to fight off the virus and it doesn't remain dormant in their kidneys, but is eliminated by their immune system.
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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 diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally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: | DizzyLizzy (05-02-2011), Grammie 2 3 (04-26-2011), Natalie8 (04-25-2011), SallyC (05-06-2011), shayna (04-28-2011) |
04-25-2011, 10:31 PM | #124 | |||
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RW, it sounds like you would have been exposed to something rolling around in the dirt and eating in other countries!! I'm sure as time goes on they will discover more about JC virus and how it operates. I feel optimistic that they have identified new experimental anti-virals which recently have seemed to help those with PML. I hope eventually there will be a way to treat PML if people get it. Then again, my neuro told me I had to be tested in another 6 months because there is no guarantee that you will remain negative forever. AND...he also told me there is a 2% false negative rate. But those odds seem worth taking. I'm just relieved as my body knows and tolerates Tysabri. I have been following people on Gilenya and it wasn't making me eager to try it. Hair loss, heavy fatigue, weird itching/tingling, and shortness of breath don't sound appealing.
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"Thanks for this!" says: | DizzyLizzy (05-02-2011), Grammie 2 3 (04-26-2011), Riverwild (04-26-2011), SallyC (05-06-2011), shayna (04-28-2011) |
05-01-2011, 06:25 PM | #125 | |||
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Multiple Sclerosis Diagnosed August 2010 |
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05-20-2011, 12:01 PM | #126 | |||
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Magnate
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#52 down!
As usual, no problems, no concerns. Pending results from my test for JC antibodies, Doc has agreed that we can switch to a 6 month schedule for appointments, rather than every three mos. I'm healthy and happy and four years relapse free!!!! He also said if my cost is too high when my company throws me under the bus (they are dropping my full service plan because ANTHEM #$%^& refuses to negotiate on any other plans because of my plan) that he will stick me in the corner and hang a bag right there. Hope I see some of you after tomorrow! If you are expecting to be swept up, please leave all your money to me, I'm going to need it since I am sure I will still be here! Life is still good!
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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: | barb02 (05-20-2011), DizzyLizzy (06-01-2011), Grammie 2 3 (05-23-2011), Natalie8 (05-22-2011), SallyC (05-20-2011), shayna (05-31-2011) |
05-23-2011, 08:40 PM | #127 | ||
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Happy for you RW
Hate what your insurance co is doing Fri I had # 55 I've been on Ty for 4 years 8 months but changed my infusion schedule, so soon you'll be ahead of me Linda |
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05-26-2011, 04:02 PM | #128 | |||
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I'm in the infusion room now getting #28. First infusion post negative JCV antibody test! It's nice to have a relief from the anxiety of PML, at least for now. Will get another test at the end of October. I'm now switching to every 7 weeks instead of every 8 weeks since the Tysabri seems to start wearing off around week 6. Hopefully I can keep the UTIs in check. Hope everyone is doing well!
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"Thanks for this!" says: | DizzyLizzy (06-01-2011), Grammie 2 3 (06-02-2011), Riverwild (05-30-2011), SallyC (05-27-2011), shayna (05-31-2011) |
05-31-2011, 02:34 PM | #129 | ||
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I'll have infusion #45 next week. I had to postpone it for a week because my grandchildren are coming to visit I just spent a week in California taking care of them because my daughter and sil both had to go into the office to work M-F. Now they're need to come to Nevada and I get to babysit again
Infusion #44 went ok. I'm having my infusions at my neuro's office now. Originally I had some concerns about the size of the room and how crowded it was, how often the infusion room was being cleaned and whether or not the infusion nurse was ill....she told me she wasn;t feeling well.....and the nurse's lack of confidentiality. However, my neuro has addressed all of the problems and I'm hoping things will continue to improve. She had the infusion nurse declutter the room so it was possible to recline in the recliners...I need to or I get dizzy......and it's now possible to get up and use a restroom if necessary. Since the room has been decluttered the cleaning staff can now dust and mop daily. It does help to be able to breathe...LOL As for the nurse's lack of confidentiality I'm hoping that having the neuro talk to her will help. After my next infusion I will only have 8-9 infusions before I must switch to medicare. I don't know if I will be able to find a supplemental insurance which will pay for Ty. Medicare only pays 80%. The cost of Ty is going up. If I can't find a supplemental insurance to help with the other 20% I may need to stop my infusions As it is we are paying $1000 a month to have medical insurance and since my husband is on medicare only $150 of that $1000 is for him. Ok...I'll worry about that in a few months. Right now I'm going to continue with my infusions and enjoy the benefit I receive from them. I hope everyone is doing well. Linda I don't know if you are in AZ or in CO now. Wherever you are I hope you are able to get your infusions. hugs to all, Shayna |
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05-31-2011, 02:44 PM | #130 | ||
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RW I'm so sorry about your insurance!!!!!!!!!! Mine will no longer allow me to have infusions at my "old" infusion center. And, I was so happy there...LOL
hugs, Shayna |
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