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Joined: Sep 23, 2007 Posts: 160 Location: Lexington, KY
Posted: Sun Jul 13, 2008 2:23 pm Post subject:
Cheryl,
I don't know of anyone since the beginning of IIb that tested more than once. There were several prospective lab rats that never had the MRTC's necessary to get into the trial. I wonder if they would test positive now that they check for more types.
It also makes me wonder why they can't find them. It seems pretty straight forward in theory but this damn disease always leaves more questions than answers.
I hope they find them for you soon because if they don't you'll have to find another means of defense. Obviously the lack of MRTC's is not and indication of lack of disease progression. I am sending positive thoughts your way and please know that you aren't alone. I think everyone else out here really doesn't know what to say. It's not that no one cares. We just hope someone comes forward with the answer for you.
Take care,
Marcia _________________ DX'd 08/2006, RRMS, currently in the Tovaxin extension study group.
I never for a minute thought or think no one cares. I am just grasping at straws here trying to figure this out, hoping for some discussion.
I've read and re-read everything and it's so confusing. Especially since I had an exacerbation 2 weeks after my first draw. It just doesn't make sense to me...
And then I read Bob's account of what happened with his wife and then I am really confused about the sequence of events about the blood draw...was it a mistake? I am beginning to doubt myself about what's going on.
I ask the "new" coordinator questions and I get no answers. They don't tell me anything. It's like it's none of my business and I am not supposed to know anything.
Just follow directions and all will be fine. She got things all screwed up before so my faith in her is not at a very high level. They have a lot of clinical trials going on....I am rambling...sorry. Just a little frustrated I guess. _________________ Tovaxin Lab Rat
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Sun Jul 13, 2008 7:37 pm Post subject:
av8rgrl wrote:
By mid-April, I was in the midst of a full blown exacerbation again. After much discussion back and forth between the clinical trial neuro and my local neuro (450 miles apart), it was finally decided that I could have 3 days of IVSM since I was technically not in the trial, and the blood draw on the 1st revealed no MRTCs. I would have to wait the 90 days for the redraw.
I am now scheduled for the redraw on June 27th.
I have another sinus infection.
Hi Cheryl,
I'm guessing just like you and everyone else but I've heard that if mrtc's were detected at the beginning of the trial, they will be again, providing that you aren't doing anything which will "mask" the mrtc's.
At the beginning of the trial I got the idea that steroids could sometimes mask mrtc's for 90 days or even longer.
With the admittance that I'm not comfortable that I completely understand what masking is, and with the admittance that it's easy for me to be patient, I think it's WAY early to let the situation worry you too much, although I completely understand.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
By mid-April, I was in the midst of a full blown exacerbation again. After much discussion back and forth between the clinical trial neuro and my local neuro (450 miles apart), it was finally decided that I could have 3 days of IVSM since I was technically not in the trial, and the blood draw on the 1st revealed no MRTCs. I would have to wait the 90 days for the redraw.
I am now scheduled for the redraw on June 27th.
I have another sinus infection.
Hi Cheryl,
I'm guessing just like you and everyone else but I've heard that if mrtc's were detected at the beginning of the trial, they will be again, providing that you aren't doing anything which will "mask" the mrtc's.
At the beginning of the trial I got the idea that steroids could sometimes mask mrtc's for 90 days or even longer.
With the admittance that I'm not comfortable that I completely understand what masking is, and with the admittance that it's easy for me to be patient, I think it's WAY early to let the situation worry you too much, although I completely understand.
Bob
I did steroids last August, last vaccine Sept 21, then steroids again in April. I had the MRTC blood draw before I did steroids in April. Negative. I retested June 27, negative.
That's my understanding as well Bob, that if you had them you should have them again.
In a way, I guess it's good that I don't because maybe I am part of non-placebo group that is responding well. But then again, it's the not knowing part that is hard. I guess you can sense my frustration and the lack of information I am getting from my coordinator. She is non medical. Can't answer any questions. Plus I live 450 miles away so it's not like I can just drop in when I feel like crap and I get into trouble for seeing my local neuro. Lately, I feel like crap a lot.
I am not quitting, I'd just like to be a little better informed instead of left hanging...see ya in 90 days. Don't call us we'll call you. _________________ Tovaxin Lab Rat
Joined: Sep 16, 2007 Posts: 77 Location: Chicago, IL
Posted: Mon Jul 14, 2008 7:48 pm Post subject:
av8rgirl wrote:
I am not quitting, I'd just like to be a little better informed instead of left hanging...see ya in 90 days. Don't call us we'll call you.
Just want to pitch in here that I do care. We do care. And I have NO idea what's going on with you. I am unscientific as hell, but this baffles the small amount that I do grasp. I get the 90 days after steroids, but I don't get the negative before, esp. with all the new proteins for which they're testing. Sucks. Sorry!!
I am not quitting, I'd just like to be a little better informed instead of left hanging...see ya in 90 days. Don't call us we'll call you.
Just want to pitch in here that I do care. We do care. And I have NO idea what's going on with you. I am unscientific as hell, but this baffles the small amount that I do grasp. I get the 90 days after steroids, but I don't get the negative before, esp. with all the new proteins for which they're testing. Sucks. Sorry!!
Patrick
I am like you...my background is not scientific and I am trying to follow all of this. I have all this information and am pretty good at putting it all together and I have this big hole with my name smack dab in the middle of it with a question mark. I have to remember something that one of my long time doctors told me that he always considered me his 1% patient. If something would go wrong, or there was a weird side effect of a drug, it would happen to me.
Good example, I am severely anaphylatic allergic to Zantac. One of those pills almost killed me and I am not exaggerating. The company came out to do a work up on me and somewhere there is a published paper about it. NO one is allergic to that drug...its the safest drug on the market...yeah right. So why do I wear a medic alert b/c of it!! LOL! Anyway...off the subject here...
Anyway, I am going to see what kind of answers I can get today and maybe shed some light on my frustrations. Maybe even on everyone else's too cuz then I will stop posting all these inane questions and stop being a pest.
Joined: Sep 16, 2007 Posts: 77 Location: Chicago, IL
Posted: Tue Jul 15, 2008 10:21 am Post subject:
av8rgirl wrote:
Anyway, I am going to see what kind of answers I can get today and maybe shed some light on my frustrations. Maybe even on everyone else's too cuz then I will stop posting all these inane questions and stop being a pest.
LOL!
I am the 1%, but only with technology!
Those of us with MS are in an even smaller percentage of the US population:
400,000 / 301,139,947 = 0.00132828608 = .1% = 1/10th of 1%.
We're all freaks, I guess.
Your questions are far from inane (lacking substance), they're good questions that seem unanswerable by those of us posting here. Suppose it's possible that lurking docs and scientists do have the answers though.
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