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Post by Corey on Jan 18, 2018 12:44:52 GMT -5
Your boy just did some very expensive drugs Ah you beat me! By about 12 days....
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Post by darthoso on Jan 18, 2018 15:28:05 GMT -5
Your boy just did some very expensive drugs Ah you beat me! By about 12 days.... I have my annual appointment next week, hoping to get answers about where things stand. Especially since they are dosing adults under the children's program but not yet the adult program. I understand scheduling and insurance issues, but internal bureaucratic delays are infuriating.
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Post by Mets on Jan 18, 2018 15:59:13 GMT -5
Your boy just did some very expensive drugs How'd it go? I'm currently in the process of getting approved, and waiting for the University of Washington to begin dosing people. It went unexpectedly smoothly, including the entire application process. I was the 12th adult to be dosed and treated by the same team at the same facility so they’ve gotten pretty good at the entire thing. From my initial consultation to my insurance approval was just barely a month, and then it was less than 2 weeks until I began the loading doses. The procedure itself was also pretty easy. I had it done under a CT scan, as they were planning on going through my side because of my fusion. To both of our surprise, we realized during the scan that my my fusion ended short of the spine, and there was room below the rods to do the injection. Since yesterday I’ve felt pretty fine, very mild headache and soreness but definitely not bad at all.
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krissnap
New Member
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Post by krissnap on Jan 19, 2018 2:41:05 GMT -5
How'd it go? I'm currently in the process of getting approved, and waiting for the University of Washington to begin dosing people. It went unexpectedly smoothly, including the entire application process. I was the 12th adult to be dosed and treated by the same team at the same facility so they’ve gotten pretty good at the entire thing. From my initial consultation to my insurance approval was just barely a month, and then it was less than 2 weeks until I began the loading doses. The procedure itself was also pretty easy. I had it done under a CT scan, as they were planning on going through my side because of my fusion. To both of our surprise, we realized during the scan that my my fusion ended short of the spine, and there was room below the rods to do the injection. Since yesterday I’ve felt pretty fine, very mild headache and soreness but definitely not bad at all. That's great, man! Congratulations! I hope mine goes that smoothly! Happy for you!
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krissnap
New Member
Posts: 17
Gender: Male
Dev Status: Disabled Male
Relationship Status: Single
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Post by krissnap on Jan 19, 2018 2:49:24 GMT -5
A bit of a tangent, but what do you think of the awareness campaign 'smash SMA' mentioned in the news story? It seems iffy to me in a couple ways: a) 'smashing' is pretty violent imagery for something describing someone's body, and b) the activity done to raise awareness is something that a lot of you might not be able to do, so it's excluding you from something being done for your benefit c) smashing random objects doesn't really have anything to do with SMA and doesn't teach people anything about SMA I'd be interested to hear what your thoughts are about that. Do you wish they'd used a different campaign? Or am I seeing problems where there are none? This appeared to me as SMA's attempt to copy the viral success of the ALS ice bucket challenge. Basically attaching your cause to some sort of stunt, and using people's narcissism to make it go viral. Imo, kind of silly/dumb, but if it works... meh...
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Post by darthoso on Apr 10, 2018 14:42:08 GMT -5
First dose in. Went pretty smoothly.
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nicks8771
Junior Member
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Post by nicks8771 on Apr 11, 2018 7:16:33 GMT -5
First dose in. Went pretty smoothly. Cool dude! I have had the first 4. Positive results so far!
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