This Is MS Multiple Sclerosis Community: Knowledge & Support

So I'm literally 5 minutes from leaving the house when I get a call from Opexa. I about shit. Anyway, they had been contacted by my donation center and they had screwed up the transport stuff for the exta test tubes they have to take besides the bag. Well they got a hold of me just in time. You would have read about me in the newspaper if I'd have gone down there and they would have told me then instead of before I left. Something about a blood bath at a blood center. To say I went off would be an understatement. I was carrying on about confidence levels in terms of handling my blood, and how would you like to be in this situation counting on incompetent people for what could be your future. Anyway, I got past the initial anger (we are now 4 weeks past when this should have happened and I ain't getting any better) and now I go tomorrow. If they screw this up again tomorrow, there's a good chance I'm out of the trial. I just can't deal with people who constantly screw up everything anymore. This is the fourth time during this trial that something was either delivered to the wrong place, or somebody just flat didn't do their job.

How am I going to know they got it down there packaged correctly and all the rest? Plus Opexa told me that it takes 56 days for the cell culture, then another 14 to process and freeze stuff (I wasn't paying a whole lot of attention at this point), so the grand total of wait time from procurement to drug is 69 days. I'll tell you, I think there is a behind the scenes trial carrying on evaluating the mental health of someone who's physically deteriorating rapidly, but being told they have access to the latest drug, only to have delay after f'ing delay. It's absolutely maddening and I can tell them what the results would be. It makes the patient have homicidal thoughts. We were supposed to go straight from the blood draw to celebrate X-mas at my mother's house which is a 2 hour drive. My sister is in from Virginia and now all that's delayed as far as my participation is concerned. I'm at wits end and I just want to beat on someone very badly, preferably someone with a lab coat.

I hope I'm not freaking anyone out with this post, but now that I've re read it, it seems a little angry . I just need for one f'ing thing to go right, that's all I ask. As I've stated before, I would have found another supplier long ago in my industry if I had one behave like this; and this whole group is who I'm counting on for my future health. I'm not exactly brimming with confidence about this whole process right now; what a bunch of *%#$ ups.

Lobbie,
This is getting hard to believe. Is the fault with Opexa, your clinic, the procurement facility or a combination? I have had a "clockwork" program so far and credit my clinical staff for it. I guess my point is that I would much rather assume clinical incompetency than the company that is toying with my cells. I'm sure it will all go swimmingly from this point.
Lars

Opexa is not to blame for any of this. You can check my posts from last winter. One time the FedEx guy delivered the stuff to the general dock and I was sent away only to be called back later that afternoon. When I went back, and here's the unbelievable part, they still didn't have it. The stuff just got delivered to the wrong dock. I just sat and said I was going to wait until the stuff got there. It eventually did, but not until FedEx had come back and picked it up! It was a long day let me tell you, but I eventually got that dose; I think it was #3 or #4.

This one was totally the fault of the blood and tissue center Lifeblood is using in my area. The lady was so apologetic (as I was calling her a boob) but she just assumed it would be like the last bag. Apparently this draw requires some additional tubes and they needed to be centrifuged and something happened where she did not look for this and overlooked that part. You have to understand I was listening, but only partway because I was ready to snap a vein. It was either that she didn't have that part taken care of or it was something about the transport of the tubes, like the refrigerant or something; like I said I was not really listening. Opexa calling me was a fluke. The lady was freaking since I was not calling back. I have a cell phone for work and I'm vacation so that sucker is off. At any rate she called back to Opexa to see if they had any additional numbers and they called me at home and told me to call my blood center to reschedule.

So to allay your fears, Opexa has not pulled a single misstep. The first one was just bad luck (I guess the FedEx guy could be blamed because it did have my doctor's office address on it and he only delivered it to the complex). This last one was totally the blood center's fault, so Opexa actually saved me more grief than I would have dealt with had I shown up to the appointment.

The nature of my last few posts has made me come off like a madman. I'm really kind of laid back (except for sometimes at work). I have been struggling through the acceptance part of having "real MS". I went from having mild bladder, bowel and eye issues, to having those way worse, horrible balance, vertigo, painful feet, weak legs, and brain fog in about a year and a half. There are times when I can be at peace with it and accept it gracefully. There are other times, like until they pull my blood, when I'm just pissed at MS. I focus on what I can't do instead of what I can and just feel a lot worse with the same symptoms I had the day before when I focused on what I can do. I've lost the most in terms of walking ability. I can still walk but it was in very recent history that I was still running daily. I don't know. It's a really weird dynamic to be thinking of this in terms of days and weeks instead of years, but sometimes I feel like it's going like that. All this crap that I'm going through now is just MS, but it's definitely taken my life over. I think about it all the time and going to work is really about all I can muster. On good days that's a good thing, but on bad days, that's a negative because I can't do more.

We'll all get through this because we have to. I'm just going through a rough patch right now.

Loobie,

I don't know how you guys do that groovy cut and paste thing but this quote from you says it all.

"I have been struggling through the acceptance part of having "real MS""

I would have had 20 ski days in by now not so long ago. I told my wife the other days that I am sick of wishing my life away. Waiting to get in trial, waiting for vaccine, waiting for it to work, waiting for the extension, etc. I am trying to focus on being positive about every day that I am vertical.......... it's hard.
Be Well,
Lars

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NHE

Bob, you seem to be forgetting it IS a trial, and it does have a placebo arm. Until the trial is finished and the results are published, its possible (even though I too have great hope and faith in Tovaxin) it may not live up to expectations.

How many shares have you purchased in opexa.

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You cannot tell, as I am not "with you" or "against you". I'm on the rational, explore all options open until proven false. I think you feel "I am against you" because I will pull you up when you state an opinion as if it was a fact.

HA! this is my jab at the fact you were assuming that the unproven Tovaxin process (within a trial setting) is the best treatment possible / available. My posts are probably confusing, as I too *think* it may be the case, but I also accept it is still medically unproven (I've done it again, haven't I...). Your post could of been made by an Opexa representative.

You take away all the fun if you just lie down to die; although easier to poke if your not moving.

I agree with you, so lets include all the odds. Including the chance that you are on placebo (30%? isn't it) so, the 90+% of Tovaxin (unproven) drops to that below the clinically proven effectiveness of Tysabri (>70% I think).

I NEVER said he would be better off, however, mathematically, over the term of the trial (2y?) another treatment such as Tysabri may have been better; mathematically. And to confuse you again, I would of jumped at the chance of Tovaxin, and so far have explicitly chosen NOT to try Tysabri; so I chose nothing over Tysabri.

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You can take out the placebo factor for Loobie. The rollover study is the real thing.

I believe the point is that it wouldn't be a good idea for Loobie to drop out at this point. Afterall, being a guinea pig for over a year, she has paid her dues.

Loobie, you are a female, right? I get confused with all the L names over here.

Using words like "proven" and "unproven" are useless arguments for us Tovaxians. We made the decision to stick our cells out for the greater good a long time ago.

I have my blood draw for the extension sometime in Feb. I hope it goes smoothly.
Hang in there Loobie!

_________________
~Sweety
Peace, Love and Potato Salad

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Cure,
I would be the first to admit that questioning many things about the trial has unfortunately become part of my life. However, those questions come by way of fatigue and the notion that I am a placebo patient and not from the ineffectiveness of Tovaxin. Maybe I didn't understand the math in your Tovaxin/Tysabri equation but I don't think one can incorporate a know placebo group into the percentages.
Lars

I knew after I sent that message I might be putting my foot in my mouth!
Sorry Loobie! Don't know why I thought you were female. I am sure I got you mixed up with someone else here.

Lyon,
The dry spell hasn't been all that dandy, but it's not been bad either.
I am just so sick of waiting for the "known" good stuff. It's ending up being way past the 52 week mark (I hope I am remembering that # right)
My first treatment was Jan 30th 2007 so having to hold out until April 2008 was not my expectation.

I shouldnt complain. I have had it better than some.

_________________
~Sweety
Peace, Love and Potato Salad

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