Loobie's 100 day club thread

Lars · Posted: Wed Jul 02, 2008 7:49 pm Post subject:

Hey Lew,
Good luck this week. I know it's no help but please know your not on this ship alone. The thought of pulling of much off anything makes me cringe. I have always said "it's all in the trying" but honestly given how hard it really is and a major EDSS slip makes it hard to make it a reality. Keep going, don't give up and you will always have a like minded partner in me.
Be Well, really, really well,
Lars

hmtucker · Posted: Thu Jul 03, 2008 7:14 am Post subject:

Lyon · Posted: Thu Jul 03, 2008 9:36 am Post subject:

I have to agree with the other guys Lew. I have no idea what is going on and I'm not going to offer any ideas because I don't want it to sound like I'm trying to drag things out. You need to do what you have to do and when you have to do it.

Have a good holiday Lew and I really hope it holds pleasant surprises.

Bob
_________________
Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.

patrickm · Posted: Sat Jul 05, 2008 11:32 am Post subject:

av8rgirl · Family Elder Joined: Apr 04, 2008 Posts: 166

Ok, maybe a stupid question here, but have you considered that you are having a relapse and maybe a round of IVSM would help? I know I had to bite the bullet finally end of April and do the steroids cuz I just couldn't get past the pain and fatigue anymore.

I know that in the trial, we can only do IVSM once. I hope you are doing better, Lew.
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Tovaxin Lab Rat

Loobie · Posted: Sun Jul 06, 2008 1:28 pm Post subject:

Back from the trip. It went pretty much like I thought it would. I would be ok just sitting, but it is literally taking maybe 100 feet of walking on flat ground now and my legs just stop working right. I don't mean they are fine for the first 100 either. It's getting tough to walk anymore than just room to room in the house period. I pretty much confirmed by the way I felt ,as well as everyone that we camp with, that I have slipped quite a bit here recently. If this keeps up unabated for much longer I can guarantee I will need to change things up major at work. Everyone who was camping with us who hadn't seen me in a few months was taken aback by how hard it was for me to get around the camp and how hard it was to get up in the camper.

To put it in perspective, I could not finish a game of cornhole (there's a real strenuous activity) after sitting around for a couple of hours. I couldn't bend over to pick up the bean bags without falling over after about 3 rounds of throws. It was pretty bad. Just sitting around talking I was pretty ok, but even having conversations where everyone is laughing and talking loudly was enough to make me get so dizzy I didn't even want to move my head.

Enough 'tests' for this ol' boy to see what I can actually do. The answer is very obvious now and it is simply 'not very much at all'. So unless I'm sitting and not moving, I'm doing very bad with leg strength, balance, dizziness, and ON. Time for me to move on I think. I'm going to start discussions with my doctor on Monday. If he suggests a round of steroids I'll do it, but we tried that once early on and it literally had no affect on me at all. If he wants to try that one time to stay in and see if Tovaxin shows up I'll do it, but if something big doesn't happen I feel it's time for me to try the next thing. Avonex wasn't it for me, Tovaxin sure doesn't seem to be, so I just have to try something else. Just getting a little bit worse every day is just not going to get it for me to feel like I'm doing all I can to try and save my life. There is not one functional system or ability that has not gotten worse. I think if Tovaxin was stopping the progression they wouldn't all be slipping, but they are. Even bladder and bowels are getting worse. drank two beers the entire four days, had no fluids after 8:00pm, and still pissed the bed every night. Good thing I planned ahead and brought some chux or my bed in my camper would still be at the campsite!

I'm not doing too bad emotionally. I have a plan now and it's not just waiting to see if my progression stops. It hasn't and I need to just admit it and move on. That's so hard to definitively say, but it's walking and talking like a duck, so I'll call it a duck. I mean it takes a while to get everything ready for JH, so if something good happens in the next couple of months I can always cancel and not go through with it. No fun, but reality is reality and that's where I need to stay. It just isn't working for me and that seems to be that.
_________________
"When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"

av8rgirl · Family Elder Joined: Apr 04, 2008 Posts: 166

Lew

I am sorry you are not doing well. I hope you get some answers from you doc. Keep us posted on what the doc says.

They say that not all meds work for everyone When you continue to decline like you are, what's the point? You have to take care of yourself.

I wish you well.
_________________
Tovaxin Lab Rat

patrickm · Posted: Sun Jul 06, 2008 4:18 pm Post subject:

Hey Lew.
Though I was wondering how a relatively stressful and energetic camping trip was going to make things better considering how you've been lately, I am exceedingly sorry to hear about your trip.

I'm very curious how you got to this point from where you were shortly after you started the shots. Unless that was a mirage or a very lucid dream, it included some drastic facility and ability that you haven't had for quite some time. Seems a lot for a placebo response, especially since you aren't on placebo. I suppose if for whatever reason Tovaxin actually doesn't work for you, then an uptick would be a placebo response. If so, it was a fairly large one.

Anyway, like everybody's saying, you need to do what's best for you. I would be curious to hear what your doctor and trial coordinator have to say, and what Opexa has to say.

Please keep us posted and I hope whatever's eating at you goes back the f*ck in its hole where it came from.

Evil or Very Mad

patrick

Jamie · Family Elder Joined: Jan 08, 2008 Posts: 156

There's always HiCy.

hmtucker · Posted: Mon Jul 07, 2008 3:00 pm Post subject:

Loobie · Posted: Mon Jul 07, 2008 3:17 pm Post subject:

Pat,

I wouldn't describe our camping trips as stressful and energetic. We're not talking Appalachian trail hiking or deep woods or anything here. We're talking pull up, unhook, plug in, extend chairs and do nothing because we can. A camping trip for me is probably about a quarter of the effort that a weekend at home is. No lawn to mow, no party to go to except right outside the camper, no laundry to do, paper plates and plasticware so dishes go in the trash, you get the drift.

So that's why I thought that seeing how I did after some forced relaxation would be prudent. Hell, I exerted less energy in a long weekend of camping than I do in one day at work. Also, placebo effect or not, what happened happened; i.e., it was real to me. Seeing how this is the internet and I know none of you personally, what good would it do for me to make that shit up? I was walking with pain free and energetic legs for a good bit there. I can't explain it, but it's not that way now and that is what it is. Psychosomatic? Maybe. Real? Maybe. Who knows for sure. I just know I hadn't felt that good in a really long time and it was for more than four days and I got excited and posted about it. That pretty much sums up what's happened. As of now, that period where I got a little better may as well have never happened for all the good it's doing me now. That's one of the things that really sucks about this whole process. You are basically 'waiting by the phone' for something to change. When it does, and it's in a positive direction for days, I am going to get really excited. Maybe I should have waited longer to post at all, but I was chomping at the bit for something positive that lasted longer than four days, so there we are.
_________________
"When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"

av8rgirl · Family Elder Joined: Apr 04, 2008 Posts: 166

Loobie · Posted: Mon Jul 07, 2008 4:43 pm Post subject:

I called Carrie Trekker at JH today and she picked up right away. She is emailing me what I have to do to get the whole process started. I'm still waiting a little longer, so I thought it would be good to get the ball rolling and see if there are any long lead time items I have to procure. I really, really want Tovaxin to work. I think it may be the answer for many, many MS'ers. But my wife looked at me this weekend and asked how long am I going to wait? It's a valid question. Save for the brief respite I had, everything has gone down hill and we are going to be at 5 months here pretty soon, and I really don't know if I was on the placebo or not, so I could have been on Tovaxin for about 18 months now. I already went through why I thought I was on placebo based on what it looked like, but I really don't know. I thought about what she had said and translated it into this: if it keeps getting worse at the rate that it is right now, next year I'll be about a 6 or 7 on the EDSS. So for me, and I can't speak for anyone else, time is of the essence.

I did have one disconcerting thing happen in our conversation though. She did say that, at least for now, they are not taking anyone who is secondary progressive. So I have to get an MRI and compare it to the one I had right before the trial. If there aren't GAD enhancing lesions, you're excluded. They are gearing up to try it on SP soon, but aren't taking it now. So I figured WTF, I can get my MRI and my records together, send them off to JH, if get excluded, I'm still in. If not, then I'll probably start packing.
_________________
"When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 393

Keep in mind Chris (PVNS)also had some serious issues in his MRI's. If you had the spots to get into the trial you probably got the spots to get into JH ASAP.

Get them in there and now that this is becoming more popular it's actually getting done really quick. Remember Keri with BlueSheild...she was cleared in 1 hour!

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 393

I still hope Tovaxin works though. I really think it's the way to go right a long with Revimmune.

It blows my mind how the body works.