| FAQ/Help |
| Calendar |
| Search |
| Today's Posts |
|
|
05-21-2009, 03:43 AM
|
#1 | |||
|
||||
|
Magnate
|
 Hey everybody!I've been a lil MIA lately!  I'm working too hard to get everything that needs to be done at home DONE before it gets too hot to work in the yard, working too much at my job, not sleeping enough, and getting ready to start another job in addition to everything else. I'm actually looking forward to this, since it's a job I love and I can't wait to restart it! I had to do a bunch of recerts too so I have been averaging about 4 hours of sleep a day. I'm beat, my sleep schedule is way off and life is still good!  I go for # 26 today!! Yay!!  I plan on taking a few minutes to celebrate! I couldn't sleep so I got up to putter and I was thinking about how it's been TWO YEARS since I started Tysabri. I've only missed one infusion and I am just so pleased with the NON progression and the NO DISABILITY that has come from this drug. What a freakin' miracle this stuff is for so many of us! I know I wouldn't be able to do what I am doing now if it wasn't for Tysabri. All the carp before is almost just a bad memory now, the cycling through the relapses, the vision problems, the balance garbage, the cognitive malarkey, and the utter despair in knowing that I was losing me!! Having all that blackness turn to joy is amazing! Time IS brain, my friends. I'm so glad I still have mine and that you all still have yours and that we can come here and rejoice in our triumphs and find support when it's not going so well! Today will be a GOOD day!  
__________________
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 diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally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! . |
|||
|
| "Thanks for this!" says: | ewizabeth (05-21-2009), Natalie8 (05-27-2009), PolarExpress (05-22-2009), SallyC (05-21-2009), Stacer (05-21-2009) |
|
05-21-2009, 08:20 PM
|
#2 | |||
|
||||
|
Magnate
|
...and it WAS a good day!
The sun was shining, it was actually hot out, the infusion went as usual. There was NO chocolate cake...so I will have to make one for myself! Hope everyone is doing well!! (p.s...I found my previous post on an investors board today...)
__________________
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! . |
|||
|
|
|
05-22-2009, 12:11 AM
|
#3 | |||
|
||||
|
Grand Magnate
|
Hey RW! My having "a brain" is questionable under the best of circumstances
 ..But no matter, I agree it's great to be able to come here for understanding and support! I'm so glad you're having a great time, feeling well, and still going strong on Ty..It gives me hope!
__________________
. |
|||
|
|
| "Thanks for this!" says: | Riverwild (05-22-2009) |
|
05-22-2009, 08:42 AM
|
#4 | |||
|
||||
|
Elder
|
Quote:
 I agree with you about Tysabri. I feel very lucky that I can get it and that it works so well for me too. 
__________________
Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 |
|||
|
|
| "Thanks for this!" says: |
|
05-22-2009, 11:12 PM
|
#5 | |||
|
||||
|
Magnate
|
yeah...so there was another case of PML reported on Biogen's gloom and doom spot today.
US patient, 24 doses. http://phx.corporate-ir.net/External...R5cGU9Mw==&t=1 No other information is available at this time, but as you know, when more info is available we'll post it here. Keep your eyes open on other MS boards and if you find anything, post it. The good news?...we are still 30+ cases behind that "other drug" that is used off label to treat MS that has PML associated with it, you know, the one that Biogen also sells along with Genentech, the one that doesn't have any monitoring program so they don't report every freakin' case? Biogen has also guided that they will continue posting PML cases for Tysabri until July 24, 2009, the third anniversary of the relaunch of Tysabri, when it expects the risk/benefit profile of Tysabri to be clearer. http://www.nasdaq.com/aspx/stock-mar...bri-ms-patient Hope everyone is doing well! Have a good Memorial Day weekend!!
__________________
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! . |
|||
|
|
| "Thanks for this!" says: |
| Closed Thread |
|
|
Similar Threads
|
||||
| Thread | Forum | |||
| LDN Information & Check-in 2 | Multiple Sclerosis | |||
| Tysabri Information & Check In | Multiple Sclerosis | |||
| LDN Information & Check In | Multiple Sclerosis | |||
| Part 2...Medicare Part D/Prescription Coverage | Parkinson's Disease | |||
Hybrid Mode
