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09-07-2009, 07:05 PM
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#171 | ||
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Welcome to Tysabri Maryann ! Hope you will be at least as pleased with it as I am.!! This month will be 3 yrs for me-38 infusions
 Linda |
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09-07-2009, 11:14 PM
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#172 | |||
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Grand Magnate
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Welcome to Ty, Maryann!!! I hope it works for you as well as it has me..Still feel the same, but had great results according to my last MRI & assorted Neuro tests..
My next infusion (#6) is tomorrow. The only thing I don't care for is driving thru Twin Cities traffic.. 
__________________
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09-08-2009, 11:07 AM
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#173 | |||
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Magnate
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Today I opened my email and found the monthly newsletter from Trevis Gleason and Everyday Health. There's a post from a man- Jim Pattee is his posting name- who is the husband of the woman from the US who died from PML in December of 2008 http://www.everydayhealth.com/blog/t...ple-sclerosis/
His wife is patient # 6 (the 3rd patient post re-introduction) on the Tysabri PML chart) http://pietynorwit.com/Tytable.htm He has indicated his willingness to answer questions. I have left a few of my questions and thought maybe folks might want to ask some of your own or follow his answers. Words cannot express my appreciation to him for being willing to discuss something that must be very painful for him, and to give us some insight as to what they went through. I look forward to hearing from him and thank him in advance for any answers he can give us.
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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 diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally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! . Last edited by Riverwild; 09-08-2009 at 11:42 AM. |
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09-08-2009, 01:07 PM
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#174 | ||
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Riverwild, I tried every which way to find the post from Jim Pattee with no such luck
 Any suggestions ?Thanks, Linda |
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09-08-2009, 01:32 PM
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#175 | |||
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Magnate
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Quote:
This is page 2 and his post is the first post on the page. 
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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: | Grammie 2 3 (09-08-2009), Natalie8 (09-08-2009) |
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09-11-2009, 01:31 PM
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#177 | |||
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Magnate
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Drum Roll Please...
30 infusions down! Noproblems, no concerns, all my blood work came back great except for my Vit D panel, while the numbers are up, I have to increase another 1000 units, he wants to see higher numbers. He says I am still dehydrated and said DRINK MORE WATER! (imma gonna start leaking from my pores like a sprinkler!) We discussed the latest news from Biogen (NONE!  ) and even though there are rumors of another PML case emanating from overseas, he had no information for me. I asked why and he said he didn't get a call back from the info line. I immediately sent an email when I got home, chewing them out for not responding and suggesting that they get on the stick and DO what they are supposed to do. Their guidance is that all news will come from your physician now. When the doc doesn't GET the info, they can't answer the patient's concerns and I want INFORMATION. I reminded Biogen that they make a LOT of money from us and that we are NOT mushrooms and I don't want to be fed **** and kept in the dark. I bet I get a response...  We shall seeeee...Hope everyone is doing well! I am on the last few days of my vacation and plan to take advantage of my time and fix my leaking toilet! 
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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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09-11-2009, 06:39 PM
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#178 | ||
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Member
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Riverwild, great news on #30
As for Vit-D maybe try 10 min of sun evryday. How much you drinkin girl ?As for Biogen and your e-mail...you go girl Fixing a toilet doesn't sound like a vacation to me but hey-whatever "floats" your boat Linda |
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09-11-2009, 11:03 PM
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#179 | |||
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Grand Magnate
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Had infusion #6 this past Tuesday and all went well. Signed a release of info (to release info to ME, for cryin' out loud) since my last one apparently expired. Since I know things are much improved, I want them to send a CD with my Feb MRI and the latest one ~ just to see what "dismal" looks like
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__________________
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09-12-2009, 08:13 AM
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#180 | |||
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Magnate
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Quote:
Funny how you have to give permission to release info to you! Don't you hate it when they say..."dismal"? My personal "dismal" was "too many to count" AAACK! Glad it's going well for you! "...Fixing a toilet doesn't sound like a vacation to me but hey-whatever "floats" your boat Linda "It wasn't. It still isn't fixed... everything is replaced, water gets turned on and oh looky! It leaks from EVERY bolt and gasket now! I am nothing if not determined and I am GOING to repair this stoopid thing without paying someone if it takes me a month! Fortunately, toilets flush with buckets of water too! ( pre-Tysabri I would have had to pay someone! Now I have strength and energy, so I have to do it myself! )
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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: | Natalie8 (09-12-2009) |
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