Hopefully this will make the webpage easier to understand. I had questioned in an earlier post how Tovaxin had gone from its original 40% effaciacy to it's current (claimed) 92% effaciacy and in his email (which I turned into that webpage) Tim is showing me a Tovaxin history/timeline showing it's different effaciacies in these articles (links).
IHaveMS-com wrote: Bob, Patients will stay with the site they enroll with. I enrolled in Houston and must stay there. The only reason that someone would not continue where they started would be if the site did not continue as an extension participant. I assume they will want to.
If someone moves during the study, they must continue with the site they started at. This will keep all of the evaluations consistent.
I thought I would drop you a note. I don't know if I can ease any of your anxiety, but I will tell you what I do and a little more about my MS.
Since relapsing remitting does exactly as its name implies, I have always used the 4-day rule. I did not consider that I had a problem or an improvement unless it was present for 4 or more days. Trying to analyze every little twitch your body has will start to drive you nuts. It is like someone looked at you and said "I think I see an ant crawling on you." Whether there is really an ant or not, you will feel all crawly.
There are approximately 83 symptoms of MS, and on any given day they will wax and wane. Anxiety, heat, fatigue, etc. can heighten any one of the symptoms. When I am fatigued, I have greater difficulty walking. When my anxiety level rises, it is like I am plugged into an electric outlet and my nerve endings buzz.
My MS was very fast and very aggressive. I went from running cross country to and EDSS of 5.5 in about 3 1/2 years. I have primarily CD-4 MRTC, but I do have some CD-8 MRTC. The CD-8 cells are what you would expect to find in a person with primary progressive. I assume I am a hybrid between RRMS and PPMS. My MS was progressing so rapidly, that it was felt that I was transitioning into secondary progressive.
Even though your sleeping through the night does not pass the 4-day rule, I do find that promising. Since you have had 5 years of interrupted nights, to see the number of interruptions decrease would be a great improvement. It would not change your EDSS, but it would change the quality of your life. If you currently get up 3 times a night, and don't start getting up 4 times a night, that is what you should be looking for. The bottom line for Tovaxin, is that it is hoped that it will keep people from getting worse.
Thanks Tim, I mentioned your four day rule to my wife and it seems that is something good for anyone new to MS to keep in mind. During our recent trip to Las Vegas we did a LOT of walking and she was concerned that a relapse was coming on. Now it seems what she experienced was probably due to fatigue.IHaveMS-com wrote: Since you mentioned the email I had sent you and my 4-day rule, I thought I would post it.
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