Last first phase and first extension visit

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby Loobie » Sat Dec 15, 2007 10:06 am

They haven't said anything about my MRTC's at all. However, since I just had a relapse and they don't want to dose when you are in a relapse, therein lies the apparent problem. I KNOW I'm not in a relapse now, and their has never been mention of no MRTC's in my blood. I don't think that's the point. I think they are being cautious because of the no dose during relapse thing, but like I said, if they don't get this shit started, I'll be in another one sure as hell. My last post was probably a bit disjointed since it is hard for me to maintain a cohesive flow to my thoughts once my trigger has been tripped. I woke up extra pissed since I know I can't bug anyone today! I have to wait until Monday to start up the whole "nag until you get some real feedback" process.

I may just be 'shouting at the ocean', but at least it feels like I'm doing something. I don't know Bob, I've just had a progressively worse time of things physically and I'm just really reacting to all this emotionally instead of intellectually and that just puts me out of where I usually reside.

So to answer your specific queries; they are NOT wanting to dose during a relapse. You got the opposite impression from my rant it looks like. And no, they haven't told me that my MRTC count is low. They've told me nothing and that's why I'm so frustrated. If they tell me my MRTC count is low and they can't make it, I'm pulling out and trying something else. I can't just sit on my hands and continue to 'fly naked'. It may turn out to be the worst decision I could ever make, but after having three exacerbations this year, I'm not about to risk another year without having at least something in my system that somebody says may work. And to top it off, I just read an article (I was going fast, so I don't remember where it is) that talks about a trend in MS. They talk about people that have sphincter muscle issues tend to have a more virulent course. Guess what I have? It could have been just someone's theory, but it got published and in the emotional state I'm in, I can't get that thought out of my mind. I'm just in a really bad spot right now and if my research coordinator were in front of me right now, I'd choke his skinny ass even though all of this is probably none of his fault. He's just the face of this trial for me and right now this trial can kiss my white ass.
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Postby Lyon » Sat Dec 15, 2007 11:09 am

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Postby Loobie » Sat Dec 15, 2007 1:05 pm

I think I'll try that on Monday. I have to chill out first and that's the ONLY thing that is apparent from my last few posts :D . I've just been nice and solid the last week or so with major leg weakness only showing up after walking significant distances. That's a big change from having them weak right out of bed so I'm like "DOSE ME NOW WHILE I'M DOING ALRIGHT!". But the only one on or aware of my time schedule is me. I'm quite sure Opexa would not be able to make any type of exceptions for a whiny trial participant. I don't think they can make any exceptions for anybody or it violates protocol. It just seems to me, at least for the time being, that these delays are a violation of protocol. I mean everything was so time sensitive once we got in the trial. Maybe that's my disconnect. Maybe the strict following of dosing and what not during the trial really only kicks in once the drug is made and they're ready to stick you. As the day has progressed, I have calmed down significantly. I almost wish I could take back my early morning rants, but hey, that's the place I was in right then. Thanks for being my sounding board this morning. I had to bitch or I was going to explode.
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Postby Lyon » Sat Dec 15, 2007 1:32 pm

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Postby Loobie » Sat Dec 15, 2007 2:51 pm

I totally agree with that. It's the old it'll look different in the morning thing. Like I said earlier, I'm not very histrionic by nature, but I sure have been these last few weeks. Just make sure when you have those toothaches that they don't put mercury in there :wink: !
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Postby Lyon » Sat Dec 15, 2007 3:16 pm

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Postby Loobie » Sun Dec 16, 2007 7:42 am

And it's better when oddball things happen to a true oddball :lol: !! Just kidding! I used to get sinus infections alot as well, but I started using a nasal irrigation device called a NETI pot and they have gone away. It's a very benign nasal "douche" if you will that I do every day after work. It feels awesome in the winter when your sinuses are dry. If you still have sinus issues, you should check it out. You can see it on http://www.himalayaninstitute.com. If that doesn't work, google NETI pot and it will probably be the first hit.
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