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Joined: Sep 12, 2006 Posts: 875 Location: Dayton, Ohio USA
Posted: Fri Jun 20, 2008 8:47 am Post subject: Loobie's 100 day club thread
Well,
I really wanted to post this about a week ago, but I had to give it the 4 day test, plus a few. After about an entire month of feeling better, I have slipped back to where I was before, and actually a little worse. If you remember from my previous 100 day club post, I had been feeling more stable and much stronger in the leg dept. Not running or anything, just feeling a lot more steady and having more energy.
Well on Monday I woke up and my weakness around my knee was there. I didn't give it much thought and thought I just needed to go through my normal morning and get it loosened up. Well it didn't. As the day went on, my left leg got weaker and weaker until I had to leave work. Probably more from fear because I could still walk, but I was limping noticeably. Along with that, my shitty sleep patterns have returned (they were getting slightly better), my dizziness is back hard core, my ON flares up with almost no effort; even in the AC, and my legs, especially the left one, are as weak as they've ever been. I am limping right out of bed in the morning. No effort required to get it to lose any strength, it's just left.
I am, however, not in horrible spirits. For some reason, and I couldn't tell you why, I just have a feeling this is a temporary setback. I have no good foundation for feeling that way since I gave it 5 days rather than the usual 4. It's probably just wishful thinking and denial and will come back and bite me in the ass. My left knee area is so weak that I'm doing the old man shuffle when going down the stairs. You know one foot down and the other to the same stair and then one foot down and then the other to the same level. I can't go down them normal because it feels like my left leg is not strong enough to take my whole weight until the right one hits the next tread down. The dizziness is absolutely horrific since it's warmer out.
I go for my fourth shot on the 25th and I am going to work my Dr. over about what he thinks. I cannot stay in this trial if I keep slipping down. While there is still something to get back (I hope) I need to try it. I keep getting up from my desk after an extended sit down thinking it's going to be stronger, that I just needed a little more rest. It just isn't working right whether I'm rested or not. This is a pretty good set back for me since I felt I was stablilizing. I'm just hoping it disappears as quick as it came on, but for now, I've definitely suffered a longer than 4 day setback. I told you all I'd post; good or bad, so here it is.
I've got to give the next shot a chance, but I won't give it long. I'm not going to lose the ability to walk without trying everything, and that includes the Revimmune. Me and my wife did the 'long walk' portion of my monthly evaluation and I was walking very erratically by the end of it. That's WAY different from my last visit right before shot 3. The shot 3 walk was my fastest in a while. Like I said, for some reason this just feels temporary, but I know I'm probably just fooling myself because I want so badly for the progression to stop.
Well there's my update. I'll update this again a week or so after the next shot, but if I keep getting weaker, I'm getting my records together and seeing if I can get a bed at JH. I wish I didn't have to post this because my head was really in a good spot, but I can't ignore what's going on just because I don't want it to be. _________________ "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.'"
Joined: May 04, 2006 Posts: 295 Location: Calgary, AB, Canada
Posted: Fri Jun 20, 2008 9:47 am Post subject:
HI
I am sorry to hear that you are having troubles. I Know that you have a great attitude about this illness and I know that you will fight. My thoughts are with you.
NN
Joined: May 04, 2006 Posts: 3402 Location: Mid-Michigan
Posted: Fri Jun 20, 2008 9:55 am Post subject: Re: Loobie's 100 day club thread
Wow, thanks for the update Lew. You're right, that does suck.
Not that it means anything more than a couple of die hard optomists agreeing, but I share your feeling (or would like to believe) that this is only an (eventually) explainable temporary setback.
On the other hand, who can blame you for no longer being able to afford unlimited patience....if it comes down to changing treatment options in the near future, it's just a matter of your having to look out for #1.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Nov 29, 2006 Posts: 83 Location: Versailles, Kentucky
Posted: Sat Jun 21, 2008 5:47 am Post subject: Re: Loobie's 100 day club thread
Loobie wrote:
After about an entire month of feeling better, I have slipped back to where I was before, and actually a little worse.
Lew,
I'm sorry to hear that you're not doing well. You can take my comments from here for what they're worth, which probably isn't much since whether or not I was on Tovaxin is total speculation on my part. When things started changing for the better for me, it was almost like I was riding a sine wave with long stretches of doing much better followed by a stretch of 5+ days where I was doing worse. In describing it to my wife I said that it was like the MS was "fighting back!" As time went by the bad stretches got shorter and shorter until everything stabilized on the good side of things (up until my small flare at the 8-9 month mark). Who knows whats going on here but I hope things turn back around for you soon.
FYI, I have been scheduled for my first injection on July 15 (exactly 10 weeks from procurement).
Joined: Sep 12, 2006 Posts: 875 Location: Dayton, Ohio USA
Posted: Sat Jun 21, 2008 9:38 am Post subject:
OK Mike,
All the ten week thing is doing is making me think my '69' theory had some merit . I take some small comfort from what you have described as what will hopefully be immortalized as 'the sine wave effect'. As I stated before, my feeling that it's (hopefully) temporary pretty much follows that logic. I pontificated heavy duty on this last PM (I'm using all my big words today) and found one difference in this setback that's making me feel this way. Allow me to explain:
I have always told my wife that we are going to be hard pressed when it comes to understanding depression in MS. I mean to the average person, of course you are going to get depressed just over the thoughts of going downhill, and those thoughts are obviously more prevelant when you are in a relapse/increase in symptoms. But I also strongly feel that it's a physiological part of a relapse. I feel this way because I'm kind of a good benchmark for monitoring depression because I'm a very optimistic person. When I have had marked disease progression over a short period; call it a relapse, but mine are never aggressive and I can never tell if it's really an "attack"; it is always accompanied by depression about two days before the physical stuff starts and always accompanied by my coming out of it about two days before it's 'done'. Well this increase in symptoms is unusual because I have had no blue feelings at all.
I can't call that scientific by any stretch, I just know how MY disease goes. I could just be completely fooling myself, but I surely hope not. My optimism could be completely hammered in short order if things keep getting worse. It just doesn't 'feel' like they are going to. I really can't explain it except for what I just described. Like I said, nothing scientific, but more gut feel. I am going to start seeing how much I can exercise today and see if I can get some strength back and hopefully I get back to the peak of the sine wave soon. During one of my 'normal' increases in disease activity, I would have never been ready to exercise this quickly. Maybe I had a virus or something, I don't know, but I'm not feeling awful about the whole thing and that, to me, is just huge. This whole progression thing is a massive spirit and positive attitude killer and any reprive from that during a period of increased symptoms is welcome.
Lew _________________ "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.'"
Joined: Sep 11, 2007 Posts: 679 Location: southern California
Posted: Sat Jun 21, 2008 11:32 am Post subject:
Hey Lew-
I'm following your progress, buddy.
The heat has come on pretty strong for us in socal (111 degrees today!), and it causes some "fritzing" of the neuronal wires. Jeff gets more of his symptoms when he's hot. Maybe that's playing a part in your temporary set back?
Also- re: depression as a "warning sign" Jeff gets that as well...since most of his lesions are in the corpus callosum part of his brain (the part that connects the left and right hemispheres and helps us talk about our feelings.) When I see that distant look, I know he's in a bad place and try to get him chilling (literally.) His depression started ten years before his MS diagnosis, so we know that was the part of the brain that got hit first.
Keep exercising, but make sure to take a cold shower and stay hydrated. You are doing great, Lew...this too shall pass.
AC _________________ Husband diagnosed RRMS March 2007
pursuing endothelial healing
Copaxone, Swank, supplements, laughter
Joined: Sep 12, 2006 Posts: 875 Location: Dayton, Ohio USA
Posted: Sat Jun 21, 2008 1:32 pm Post subject:
I hope you're right Joan. Thank you for your encouraging words and all the hard work that you do to understand all this. We all need a Cheerleader . _________________ "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.'"
Joined: May 04, 2006 Posts: 3402 Location: Mid-Michigan
Posted: Sat Jun 21, 2008 3:41 pm Post subject:
Loobie wrote:
Well this increase in symptoms is unusual because I have had no blue feelings at all. I can't call that scientific by any stretch, I just know how MY disease goes.
Maybe not scientific but this one seems too strange to be entirely imagination and it somehow makes sense.
Tim's Rules wrote:
1. It isn't an attack unless it lasts for more than 4 days.
2. I will not consider my EDSS to have changed unless it stays changed for 2 or more consecutive assessments.
3. I will remind myself that the hope for Tovaxin is to stop the attacks. Any restoration of lost functions is up to my body.
4. I will not expect to sense any difference until at least 100 days after my first injection of the “real stuff”, and it is possible that it might take 4 treatments plus 10 days for my immunity to get up to a sufficient level to fend off attacks. http://www.thisisms.com/ftopict-5631.html
5. If I get some lost function back and I lose it again, I won't think that I am having an attack but rather, that the body needs to do some more restoration to the nerves that control that function. But, if I get back some lost function and that restoration lasts for more than 8 weeks without interruption, it is for real, and in that case, if you lose the regained function after 8 continuous weeks of having it, discuss that with your neurologist.
6. There may be a point during the 100 days that you sense things are starting to get better. Use the day before you get that feeling as your baseline. No matter what ups and downs you encounter going forward, if you don't drop below your baseline, Tovaxin is working.
7. This is a patient-specific vaccine and there are a lot of other patient-specific rules. And most important of all, results will vary http://www.thisisms.com/ftopict-4133.html
This has been a long roller coaster ride for you Lew and now that you are on the real thing no one blame you for getting impatient to notice and maintain improvement but Tim's rule #5 seems logical and is otherwise substantiated.
I think the improvement you've noticed is very positive because it shows the minimum point that you can expect to improve to permanently.....after trying your patience many times over!!
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Sep 12, 2006 Posts: 875 Location: Dayton, Ohio USA
Posted: Sat Jun 21, 2008 6:55 pm Post subject:
I appreciate you bringing those guidelines back up. I had totally forgotten about that post of Tim's. He is very thorough and sometimes I don't go check back to old posts for information. It helped to read that rule and I think you are right that I'm most definitely getting impatient. That one's hard to deal with also since I'm getting impatient for something to work that may not. That's the frustrating part. It's not like I have a really bad headache and the Advil didn't work, so I just take more. Bad analogy, but thinking about the need to 'step back from it all and observe' is really hard when you are in the middle of it. I think an objective observation is what is needed for me right now because, since it's me after all, I am emotionally driven and not in my normal head based state of mind. Man I hope this all plays out that way. I really hadn't thought of it from the angle that I haven't improved much at all in the last 18 months until recently, so maybe that is showing me that, at the very least, SOMETHING is going on and that's more than I could say for a while. _________________ "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.'"
Joined: May 04, 2006 Posts: 3402 Location: Mid-Michigan
Posted: Sat Jun 21, 2008 9:17 pm Post subject:
Hi Lew,
When trying to visualize the damage that has been done, I try to keep in mind that comparison you made regarding the optic nerves being a multi lane highway and that you could close many lanes without problem until you got down to the threshold where there were just enough lanes left (optic/neural network paths) to continue function in the best of conditions but sickness, stress, exercise, heat lower efficiency of the taxed system enough to make it seem that symptoms are progressing.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Sep 12, 2006 Posts: 875 Location: Dayton, Ohio USA
Posted: Sun Jun 22, 2008 5:54 am Post subject:
I do have something coming up that is kind of stressing me out. I'm supposed to go to South Korea in a week and I have no idea how much walking will be involved. There are also some huge cultural differences and I don't know how me getting up 3-4 times an hour in a meeting to go pee is going to be perceived. Oriental culture is SSOOO different from ours. There is much more decorum in initial meetings. I hope it's not a big deal, but I have to find out and I don't know anyone Korean! I even told the president of the company that he may have to "push my ass around". It's stressful, but I've been may way more stressed than this is causing me to be. Who knows, I just hope kimche doesn't flare up MS! The flight won't kill me since there will be very long stretches where you can get up. It's those 45 minute flights that suck. Straight up and straight down. They try to keep you in your seat the whole time. I told a stewardess once that I'd stay seated but they'd need a cleaning crew if they had the seat sold for the next flight!
I think I'm going to see if one of my engineers can go in my stead, but I think I'm the only one in the department with a valid passport. My new guy might have one, but he's only 23 and has no experience with this kind of stuff. Oh well, maybe it will help me find my limits. The other thing that is giving me pause about the whole thing is the jet lag. I think I'll have a good long conversation with the president on Monday. All I can do is lay it out on the table and see how far he is willing to help. He's been pretty awesome to this point, so I'll think he'll be ok, but I must tell you. Business travel is not the best thing to be doing when your MS is active. I've simply lost the ability to rush, rush, rush. _________________ "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.'"
Joined: May 04, 2006 Posts: 3402 Location: Mid-Michigan
Posted: Sun Jun 22, 2008 7:17 am Post subject:
Hi Lew,
That situation isn't only something that would stress someone with MS at the time but is capable of stressing you out far ahead of time.
One thing that has always been true and that Campath, HDC/Revimmune and Tovaxin can improve but can't entirely alleviate is that MS F____s up people's lives.
Even though you are on Tovaxin and have good reason to think that your MS is done progressing, it's sad but true that the damage that MS has caused is far from done F____ing up your life, just as it's far from done F___ing up the lives of the people who have endured Revimmune and Campath treatments.
You know your limits better than anyone else , but with it in mind that residual MS damage is almost certainly going to be a negative factor in this upcoming trip, you might want to mitigate the situation to your greatest advantage ahead of time.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Sep 12, 2006 Posts: 875 Location: Dayton, Ohio USA
Posted: Wed Jul 02, 2008 3:54 pm Post subject:
No they haven't. I can't say they've gotten drastically worse like I've had a massive attack or anything, but I do not feel like any improvement at all is happening. I'm in a real bad spot as I write this. I took the entire week off to keep an eye on things since everything is feeling very precarious right now. When I say that I mean it takes almost no effort at all for me to need a rest. We take a camping trip every year on the 4th weekend. Just going up and down my basement steps twice today to try and prepare has absolutely tapped me out. It's so frustrating. I don't know if I'm getting worse or not. It's just that I can hardly do anything without it making my legs go to rubber, my eyes turn to fog and, as always, make me have to pee. And my constipation has gotten worse over the last couple of weeks.
I just don't know. It could be mental I guess because I think we can feel markedly worse when our attitude sucks. Mine sucks right now, but I'm not so sure it's not because I can hardly do shit right now. I mean I'll get up from reading for about an hour and my legs aren't feeling too bad, so I'll decide I'm going to do something that requires walking. I'll go down the stairs loaded for bear, ready to actually maybe do a load of laundry. By the time I barely even get started I'm totally worn out, falling into every GD thing, holding on to everything to keep from going down, confused, legs have turned back to rubber like they were before I sat down to read. I mean fucking take my ability to be mobile or kiss my ass. Don't make me think I can get around but make it hurt like hell in five minutes to where I have to sit right back down and take another huge break, I just don't know how much more of this I can take.
Somethings got to give. I'm on the razor's edge of major life changes. I mean it's like Robbie's version of the EDSS the other week. There are days you think maybe you can beat it, but lately those have been coming few and far between. The amount of shit that has to be dealt with to get to work now demands that I have to get up 2 hours before I'm due in. That's what I mean about being on the razor's edge. One more thing to have to deal with and the scale will have tipped to where I can't function without serious accomodation. I mean I would even take a cane right now, but my problem, although stronger in the left leg, is bilateral and after a little walking now, both legs don't want to go.
I'm sorry I sound like I'm having a huge pity party on this post. It's just that I know I'm getting the goods now, but stuff keeps happening. I try to look the other way at it because I want it to work so badly, but I just can't ignore the fact that I'm functioning at a lower level than I was a month ago. I mean I can still use all the things I could a month ago, but the line I have to cross before a good rest is required is getting closer and closer. Pretty soon I'll feel like this without effort because that's the way this whole thing has gone for me. OK at rest, but after effort it all shows up. It used to take a full day and a 5 mile run. Then a 3 mile run, then 2, then none, and now it's just going down the stairs. The line keeps getting closer and closer. I use denial in a way that helps me get through the day, every day. Using it right now may be more destructive as I have a huge decsion to make about staying in this trial or not.
I'm going freaking camping in the morning. It's 5:30 right now and after an entire day, I've gotten absolutely jack shit done. My wife has to do it all and that just kills me. This shit is getting ready to turn my life completely on it's ear post haste and I haven't been quite to this point yet. I've always managed to just get enough done. Well now it's not like that. I am going to have to ask for serious amounts of help to do everything from my family and friends. I know this is something everyone who has MS that gets to this point has to deal with. Now I have arrived here, and I don't like it, not one bit. No one does/can, but you just aren't equipped to deal with it no matter how much you think you've prepared. You read about it, try to imagine it, but it 'ain't real 'till it gets here. It's almost on me now.
I've decided my litmus test is this weekend. If I do as well as I did last camping trip, I'll stay in for a while longer. If I feel I did not do as well, then it's time for me to just admit that Tovaxin doesn't work for me becasue I've had four shots now. Then I'll guess I'll get my shit together and go to Johns Hopkins. I'm right at that point where it's getting ready to take so much extra accomodation that I won't be able to handle it all every day. I'm so fucking scared. Take this post for what it's worth since I did already state I'm in a bad way right now. But wishful thinking is only going to go so for and I have to start looking at this completely pragmatically. It's working or it's not. If the answer is no, I have to accept it and try something else, but sitting around hoping and not getting any relief at all is just going to make me worse. It's not working for everyone, and I guess I just have to accept the fact that maybe I'm one of them. I'm not giving up without a fight. I will go to the ends of my finanacial earth to get rid of this and I suppose I still might strike out, but it won't be for lack of trying. _________________ "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.'"
Joined: Sep 12, 2006 Posts: 875 Location: Dayton, Ohio USA
Posted: Wed Jul 02, 2008 4:32 pm Post subject:
Mike, to answer your question, No things haven't bounced back for me. I'm sorry I went on a rant like that, but that's what I do. I suppose I could just write stuff like that in Word and then erase it after I calm down, but we're all different and that is a way that allows me to process, so there we are. So Mike, I apologize for responding to you like that. I just don't want anyone to think I'm badmounthing Tovaxin. As with all MS stuff, it will work better for some than others. If it's going to work for me, it hasn't shown up yet, but that shouldn't really mean anything to anyone else in the study. Have a good fourth everyone. I'm going to give it hell myself and see what happens. _________________ "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.'"
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. I take some small comfort from what you have described as what will hopefully be immortalized as 'the sine wave effect'. As I stated before, my feeling that it's (hopefully) temporary pretty much follows that logic. I pontificated heavy duty on this last PM (I'm using all my big words today) and found one difference in this setback that's making me feel this way. Allow me to explain:
.