Hi Bob,
First, two things -- 1) This is super: 2) Results will vary from one person to the next and the hope for Tovaxin is that it will stop the attacks. If you don't get any worse, that is good. If you regain lost function, that is great.
It's illogical to assume that stopping MS in it's tracks is synonymous with decrease in disability/lowered EDSS. I can see how in the most favorable conditions it would happen....youth and more recent disability would be the obvious favorable conditions, but my wife is 47 years old and I imagine the disability has been lurking under the scenery for years.
It would be illogical to assume that when you stop
any disease that the body wouldn't immediately start repairing itself. A paper that I read last week reported that after analyzing data of MS brain autopsies, the researchers were surprised to see how much remyelination had taken place. It was significantly more than was theorized.
In another paper from 6 months ago there was a discussion on at what point in life does the body start to lose it ability to remyelinate. The consensus was that the oligodendrocytes, which are the main repair mechanism for myelin, are active well into middle age. It is logical to assume that someone in their mid-twenties would bounce back quicker than someone in their mid-fifties (I realize your wife is 47), but the mechanism for repairing MS damage is active throughout middle age. I am not sure what is the range for middle age, but the standard for old age is usually around 70.
The day of her second treatment is too soon, especially for a 47 year old.
The day of her second injection simply coincided with her EDSS assessment. The second inject did not have time to do anything. I had a dramatic disease reversal in 21 days on a low-dose -- 1/4th of what the does is for the current study. I would have to go back and read my time line, but I think the neurologist noted that I had some improvement after the first injection, but my EDSS assessment was not lower for quite a while.
All this has made me question things I thought I was sure of. I wonder if placebo effect can actually affect EDSS and not just outward symptoms?
In every study where there is a placebo, you will see that a certain percentage of the patients in the placebo group experienced improvement. Personally, I think the placebo effect can make you feel better, but if you have lost some specific ability, the placebo effect will now allow you to do something that you are incapable of doing. The blind will not see and the lame will not walk if they did not already have the ability to do so.
I wonder if tiredness or how you feel can affect EDSS
Absolutely!
I guess the reason I didn't want to post this earlier is that I didn't want to lead people to false conclusions.
A concern I have is that when patients read my timeline or posts like yours and Mike's, they expect the same results. RESULTS WILL VARY.
Now I would like to say, "I told you so", but there is a long road ahead in both this study and the eventual approval of Tovaxin. We will all have to stay tuned to hear what happens next week, next month, and next year.