Questions and responses to the 100 plus days club members

IHaveMS-com · Post by **IHaveMS-com** » Sun May 25, 2008 1:23 pm

Hi to all,

This is where to ask your questions of the people in the study. I hope Bob will keep an updated list of all questions asked as the second post on this thread.

Go Bob

Some points to review. There will be a quiz later.

I never had an injection site reaction.
http://www.thisisms.com/ftopic-3409-0.html

MRTCs, Masking/Suppressing, and Some Thoughts
http://www.thisisms.com/ftopict-4868.html

Some things to consider if your are in the Tovaxin trials:
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

rainer · Post by **rainer** » Sun May 25, 2008 7:00 pm

It is good you encourage Bob to post since we all know how quiet he usually is

Lyon · Post by **Lyon** » Mon May 26, 2008 7:59 am

Loobie · Post by **Loobie** » Mon May 26, 2008 10:14 am

I get my third shot Wednesday and then we wait for 10 days and I'll be a card carrying member of the 100 day club. Something monumental is going to have to happen though. I went camping this weekend at a campground that doesn't have a single level spot on it and I have to tell you, I think my EDSS is about 6 right now. Probably just overdid it and need to rest. Not only was the ground not level, it was extra, extra lumpy. It was an absolute nightmare to try and walk around. Literally every step was precarious. I'm worn out. Like I said, I hope to post good things..... REAL DAMN SOON

.

Terry · Post by **Terry** » Tue May 27, 2008 5:18 pm

Lew, that sucks. I hope you are getting rested. I also hope you managed to eke some fun out of the weekend. On to the third shot. Wishing for you all good things.
Terry

Loobie · Post by **Loobie** » Wed May 28, 2008 2:39 am

Thanks Terry,

Things did settle down once I got back to civilization. We were down in Southern Ohio outside Hillsboro and you know how the foothills of the smokies start down there. My neuro. told me at EDSS eval. last night that walking on 'cobblestones' and then going back to flat is actually a good vestibular exercise. I told him that all it did for me was to make me find a chair and a beer

. So I did manage to have some fun. Plus the weather was awesome. I tested out at a 3 last night which was heartening. As you guys may or may not know, I had been a 4 for a long time. Not that that test isn't subjective as hell, but it was at least heartening not to go up. I have to fly to Atlanta today and I found out my research nurse (the shot dude) is going to be late and it's going to really push me to the limit. Thank God I'm flying out of Dayton, which you can pretty much get there 30 mins. before if it's in the afternoon. I'm not missing this shot for anything, but it wouldn't be great for work if I missed an appointment to sell to a non-automotive customer; which is our #1 priority in terms of new work for our company. The auto industry is in the toilet! Like I said, I hope to post good things soon. Keep your fingers crossed.

Lew

Terry · Post by **Terry** » Wed May 28, 2008 3:55 am

Lew,
We camped out there years ago at a place called Long's Retreat. We also camped on private land near there. There was a man who lived out there who had his own "town" with a gas station (fake) and stores and had them filled with antiques. He created it as a hobby and would let visitors come and he would show them through. It was amazing! He walked us through and told stories- my kids got history lessons and didn't even know it. He even showed us through his home, which like the rest of the property, was amazing. I haven't been camping in years, except once in a friend's back yard- we were being silly. Maybe this year...
Terry

Loobie · Post by **Loobie** » Wed May 28, 2008 5:40 am

Long's Retreat is where we were! Very beautiful views for an Ohioan that lives in the 'flats'. The place was a bit commercialized with go karts and stuff, but it was big enough to still feel 'woodsy'. I guess Dayton is right about where the hills just start to begin. Great views, bad footing, but a great campground. We canoed down the lake and started to go up the river. Some of the permanent campsites are the most elaborate I have ever seen. Big decks and covered areas that absolutely dwarf the trailers themselves.

Like I said, it was really bad for me since my legs were mush the whole time, but once I got home and rested, I was just sore but much more stable. I couldn't believe how sore my butt cheeks were! Those glute muscles must really be used when stabilizing.

IHaveMS-com · Post by **IHaveMS-com** » Wed May 28, 2008 7:58 am

Hi Lew,

On the 100th day, don't expect your EDSS to start plummeting. It took more than 2 years for mine to decrease 2 points. I was 25 years old with lots of ogliodendrocytes still floating around ready to repair some of the myelin damage. It is known that people have active ogliodendrocytes well into middle age, but their numbers are declining.

If after the 100th day, you do not have any more attacks (remember the 4-day rule), then Tovaxin has done its job. Regaining lost function is up to you and your body's ability to repair itself.

I hope you have lots of active ogliodendrocytes. I know you have the determination to help your body repair itself. It is not the amount of weight or resistance that helps rebuild/build new nerve pathways, it is the number of repetitions. I don't think you can overdo exercising, but you sure can make yourself feel terrible from too much activity.

I entered a rowing competition at the gym and needed to be helped off of the machine. I felt terrible the rest of the day, but I only had sore muscles the next day.

Report everything. Small improvement are less noticeable than small declines. I knew when something wasn't working as well as it did before, but many things that I was again doing, I didn't realize until my family pointed it out.

One of my favorite moments was when Dr. Zhang's wife, who is also an MD PhD, was just beaming with excitement, gave me a big hug, and told me that by just watching me standing up straight with renewed confidence she could see how much I had improved.

In the beginning, there were many days that I felt worse, something wasn't working right, or I just felt strange. By waiting 4 days before mentioning what I was feeling proved to be the best decision I could have made. All of the odd sensations or problems resolved themselves in 4 days or less. This also gradually relieved the anxiety that something might be happening.

My best wishes are with you and all of the other people in the study. I am off to Houston tomorrow, and I hope to have lunch with Mrs/Dr Zhang. I have some questions, and maybe she can answer them. Her special interest is remyelination. I will check back in at the end of June, but you know how to get me if you have a question before then.

Lyon · Post by **Lyon** » Wed May 28, 2008 12:14 pm

rumblebee · Post by **rumblebee** » Thu May 29, 2008 3:07 pm

I entered the clincal trial in May of last year. I am pretty sure I received the good stuff since it burned, and after the third injection I was able to go back to work, climb stairs, drive without getting lost, carry on a normal conversation without losing track of what subject was being discussed. It had seemed all symptoms where fading. Had 5 injections, and noticed an increase energy a few days after each one. Last injection was in Dec.
All symptoms have returned, I have had to take a leave of absence from work. Waiting on open label.
I am wondering if others are facing the same trials.
I read through the fourm and relize that so many have not found any relief in years, and others are considering traveling to other countries just to be in clincal.
I want to assure you that Tovaxin works, and hope that it goes to open label soon.

Lyon · Post by **Lyon** » Thu May 29, 2008 3:31 pm

Loobie · Post by **Loobie** » Thu May 29, 2008 6:07 pm

I just got my third injection yesterday. I really don't know how well it worked, and I know it doesn't 'work' that way in the first place' since I had to catch a flight to Atlanta about 2 hours later.

All I can say is that I did Hartsfield airport each day for two days, and gave a presentation to a customer, albeit seated, and did really well. My legs were fucking rubber today since I swear we walked a mile or two today on hard, ass tile. I didn't really noticeably limp today so that's an improvement I guess.

Only I could come up with "I didn't feel nearly as shitty after all the stuff I did today and that's a change"

. I'm going to go eat. I didn't eat or drink almost all day to keep from pissing my pants on the airplane.

Loobie · Post by **Loobie** » Fri May 30, 2008 3:53 am

Update from yesterday: To start I apologize for all the colorful euphamisms. Secondly, after feeling like I wanted to amputate my legs yesterday, they feel better than they have in weeks this morning. Tovaxin? Maybe, but my suspicion is that all the walking did me some good; even though it really hurt when doing it. It could be some repair that even allowed me to do that without having someone push me through the airport; I just don't know, but I hope the trend of feeling better in the legs continues. If it does, I will be more convinced it was the Tovaxin that allowed me to repair somewhat if the trend continues upwards. Here's hoping!

Lyon · Post by **Lyon** » Fri May 30, 2008 5:19 am