Struggling

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Struggling

Postby Loobie » Tue Aug 07, 2007 2:30 am

I am getting impatient again with the extension. I just posted in the general discussion about recent changes in my ability to void urine and am just absolutely maddenned with my constant downhill slide this year. During this trial, I have had more stuff get worse than the five years prior combined. I know there is nothing many of us can do, but being in this trial and not getting the drug is like the world's biggest tease. I know I don't know if I'm getting it or not, but as I've said before, if I find out I have been getting it, I'm not impressed.

If I find out I have been getting the goods, I'm not going in the extension but am going to opt for Tysabri or LDN or something. I just hope I'm in the placebo group because I'm ready for a change soon. I don't know if I can take another year of this.
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Re: Struggling

Postby JanethePain » Tue Aug 07, 2007 5:18 am

Loobie wrote:I am getting impatient again with the extension. I just posted in the general discussion about recent changes in my ability to void urine and am just absolutely maddenned with my constant downhill slide this year. During this trial, I have had more stuff get worse than the five years prior combined. I know there is nothing many of us can do, but being in this trial and not getting the drug is like the world's biggest tease. I know I don't know if I'm getting it or not, but as I've said before, if I find out I have been getting it, I'm not impressed.

If I find out I have been getting the goods, I'm not going in the extension but am going to opt for Tysabri or LDN or something. I just hope I'm in the placebo group because I'm ready for a change soon. I don't know if I can take another year of this.


When is your year (52nd week) finished? I sure am sorry to read about these troubles. :(
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Postby Loobie » Tue Aug 07, 2007 7:03 am

My year is up in Mid/late November of this year. Very soon as far as the trial goes. I asked my coordinator about my "code numbers" and mine ends in 0010. He said I was the tenth person dosed, so I imagine I'm at the front of the line for the extension to start. That is good! Only 3 short months away, but it feels like time has standing still since my last dose. Football season is about to start and I'm excited to see what the boys in black and orange are going to do!
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Postby akaheather » Tue Aug 07, 2007 7:28 pm

Okay Lew,

I'm not a big sports fan, but what team are you rooting for that's black and orange? My husband is from O.H. - I.O. and I thought y'all were all beer guzzling, corn eating, basement having, buckeyes hanging out in the Dawg Pound. (With the exception , of course, of the Amish.)

Heather

P.S. Hang on Sloopy... November is just around the corner and you know what that brings?. The 3rd Saturday in November!
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Postby CureOrBust » Wed Aug 08, 2007 1:41 am

is LDN not allowed while you are on the trial?
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Postby Loobie » Wed Aug 08, 2007 3:31 am

The Bengals! And yes I have a basement WITH a giant OSU flag in it. I'm originally from Columbus so I would probably be zapped dead if I wasn't a buckeye fan. We have nothing but farmland and manufacturing around here so we love our football. Hanging out in the dawg pound of that team up in Cleveland would be blasphemy for a Bengal's fan, so I never do that!

Cure,

LDN is not allowed during the trial as far as I know. I had always considered LDN a viable treatment option, but now that you mention it, it's not approved to treat MS, so it may be on the acceptable drug list. I really don't want to screw with my Tovaxin status, so I will be checking into that.
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Postby JanethePain » Wed Aug 08, 2007 5:47 am

Loobie wrote:My year is up in Mid/late November of this year. Very soon as far as the trial goes. I asked my coordinator about my "code numbers" and mine ends in 0010. He said I was the tenth person dosed, so I imagine I'm at the front of the line for the extension to start. That is good! Only 3 short months away, but it feels like time has standing still since my last dose. Football season is about to start and I'm excited to see what the boys in black and orange are going to do!


Football? "Bah, humbug!" exclaimeth the University of Kentucky alumna, trying to make it clear that Reality does not include anything that can't be shot through hoops (although I admit that Xavier and University of Cincinnati have some nice little teams). :lol:
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Postby akaheather » Wed Aug 08, 2007 9:02 pm

Loobie wrote:The Bengals!.


I've decided to be generous and allow you to pick your favorite reponse. So here's my best Bengal Burns.


Oh yeah the Bengals...

a. I never think about them.

b. Aren't they from Kentucky?

c. Were they the ones that sang "Walk like an Egyptian."

d. Well, I guess black and orange is better than blue and maize.
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Postby Loobie » Thu Aug 09, 2007 4:30 am

I pick D since there is no color combo worse than Blue and Maize.
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