This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi again everybody. Well, my much delayed first injection happened yesterday. I was a bit discouraged at first since I saw absolutely no site reaction on either arm. But my wife comforted me with her words that "God knows what's best for you" which I know is true and that we just need to continue trusting in Him. My next injection is scheduled for the end of this month. I wish everyone better health, both physical, mental and most importantly spiritual health because our bodies are going to turn back into dust one day but our spirits are eternal.

"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit."

written by the apostle Paul, formerly called Saul, in the year 57 to the young Christian church in Rome. Saul was a staunch opponent of the Christian faith and was actively imprisoning and even approving of the deaths of many Christians in the years following Jesus' death in the year 33. You can read more about the man Saul/apostle Paul and his miraculous conversion to Christianity in the book of Acts Chapter 9.

Hi JCML,
We've been talking about that on another thread and looking for any kind of site reaction is a waste of time as is expecting any kind of noticeably quick changes in the way you feel.

Thanks for sharing your experience with us and I hope to hear good things from you in the future.

Bob

Hey there, guys!

I had NO site reaction(s) at all and am convinced I'm getting the real juice. Then again, it might be my (over) abundance of fatty tissue preventing anything from showing up...

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Jane the Pain

Jane and JCML
Thank you for the positive posts and congratulations on your overall success thus far. It is great to see the Tovaxin results we are all hoping for start to trickle in to this forum. I hope you keep posting your results. It's really nice to follow a positive thread.
Lars

On June 5th I went in for round two of the shots. Still no site reaction although I was very slightly sore at both injection sites, but really very little. I keep looking for somebody in here that is in the Tovaxin study that is doing REALLY well, something like Tim's kind of turn around story. Does anyone know of somebody in this study that is experiencing a great turnaround? It would be great to hear from somebody like that. On a lighter note and a much more positive one, my wife and I are expecting our first bambino (or bambina?) in another 5 months, so we are thanking God for that. I really do have so much to be grateful for but I have yet to be able to add MS to that list. I really hope and pray for you and your family members to see great improvements.

Hi JCML,

Congratulations! My kids are almost grown so I'm a little envious of you, but I'm too old to function without sleep. You'll soon know what I'm talking about!

The criteria for this clinical trial is quite a bit more restrictive than Tim's initial clinical trial/study. There aren't any people in wheelchairs and it's not even possible to hear about a situation as dramatic as Tim's.

It's early in the clinical trial but there have been some good signs so far.

As Tim has mentioned, if someone does happen to be on the real treatment the situation might be as undramatic as not experiencing any further progression.

It's also important to keep in mind that this clinical trial is a double blind placebo as opposed to Tim's initial trial/study in which everyone was getting the real thing. I know from personal experience that I'm hesitant to say anything good because it's always in the back of my mind that it might be placebo effect and I might have to eat my words later. I can say that before my wife even got the second injection we were told that her EDSS had gone down from a 3.5 to a 1.0 which I think is a pretty good sign!

The good thing is that you made the commitment and the year clock is ticking so whether you end up on the real treatment or placebo you will be on the real thing in less than a year.

Bob

I agree that results for this leg in the trial may not show very dramatic changes although some of my changes are very dramtic to me. I was sleeping, on average, about 13-14 a day. Now I average about 7-8 (when insomnia is not present).

It is totally possible this is my normal course of MS fatigue changing, but I have my doubts. I was sleeping my life away. This went on for almost 2 1/2 years. I feel like I have awaken out of a coma!

Be well.

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~Sweety
Peace, Love and Potato Salad

Hi Sweety, (gee that's kind of fun! You'd BETTER not be some hairy 6'5" truck driver!)

I'm not trying to belittle Tovaxin or what it might be capable of. What is going on with my wife also seems pretty wonderful to us, but I'm just saying that the criteria for this clinical trial doesn't allow for quite the dramatic improvements that people would like to see.

Bob

I'll tell you what. The year clock needs to hurry the %&*# up. I had a brief abatement in symptoms where I felt like I was getting my legs back under me. Well for the past week, they have gotten weak again and my eyes are back to going out when I lift a 12 oz. can of pop (exago, but it's literally taking almost no exertion). I had about 3 weeks where I was feeling solid and am now back to feeling like shit again. Oh well, come on November!

I'm sorry to hear that Lew. I know that when you mention that your eyes go "out" you are referring to loss of vision and not bugging out but it brought to mind that thyroid problems run hand in hand in people with MS and I was wondering if you'd ever had your thyroid hormone levels checked?

Controlling as many of the controllable autoimmune symptoms you have can only make the MS easier to live with.

Bob

I think thyroid hormones help with remylination.

LOL Lyon! I guess I could be a hairy truck driver, but you have to take my word that I am a smooth secretary.

I agree with your thoughts. Like you said, and Tim, it's not very likely that we will hear about dramtic improvements or should look for immediate results.

I totally thought in the begining that I was on the placebo because I felt no change and actually felt worse for awhile. My edss even was worse. Now I have changed my thoughts. I think I am getting the good stuff. I hate to say that out loud. I could very well be wrong. I just know that something is different and my improvements are undeniable to me and my family.

So that in itself is dramtic. Atleast in my mind. Which can get pretty warped at times.

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~Sweety
Peace, Love and Potato Salad

And while that certainly isn't the magic bullet, as I wrote on another thread, it'll still be a much-needed slice of peace of mind. That's worth a lot!

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Jane the Pain

The most aggravating thing about that crushing fatigue is all the sleep in the world couldn't make me feel rested. I bet you felt the same way, Sweety! It seems to me that the sleep you're getting now is the "correct" kind.

It's amazing what getting that sleep cycle back on track can do for ya!

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Jane the Pain