STEM CELL EXPERIMENTS

          Well, it is March 30th, 2000 and I am heading off to Germany to see Dr. Ledwoch who took over Dr. Nieper's practice. Will return April 27th. Reason - it is the only treatment that has helped me, and guess I should not have quit using it. Live and learn!
          The following paragraphs give you a history of experimental things I have tried. Just want to share with you.
         This summer (1998) I was picked to be involved in a new research program for "Progressive Multiple Sclerosis" with a new drug from Marnax, "Perfinidone". The purpose of the year long study is to see if the drug will inhibit additional scar tissue from forming in the brain and nervous system. The program is offered through the University of Washington Hospital at Seattle, with Dr. Jim Bowen heading it up; Al Alquist assisting. The program started for me September 1, 1998, and will last for twelve months.
         Mid-August a series of tests took place at the U of WA. These included blood and urine tests; a series of MRI's; dexterity and locomotion tests, etc. Results were recorded to provide a base line against which progress can be measured over the course of the year.
         September 1st, 1998 was the first day of taking the oral drug. The protocol called for two tablets the first two days, increasing to 3 tablets for two days, then 4 tablets for two more days, then 5 tablets, then six tablets for the remainder of the year.
         Side effects were not long in revealing themselves - nausea, headaches, fatique and so on. ... uncomfortable for sure but not disabling for me, yet. An upset stomach follows each set of tablets --- three times a day as I take the drugs. I control the queasiness by eating tums - lots of them. Headaches and fatigue come and go, but not on a predictable basis after four and one half months.
         As a supplement to the experimental drug program, I also put myself on an exercise program to increase my flexibility and balance. This consists of "stretching" exercises to limber the body, followed by some simple toning and strength routines such as situps, pushups and breathing exercises.
         The drug program, coupled with my exercise routine, has proved rewarding. First, after just 30 days, my walking and balance improved. However, my speech slowed down somewhat. Sixty days into the program, my walking and stamina were still better than before I started on the program.
         I am also pushing myself to do things that I have not done for several years: including - raking leaves, breaking up some sod for a garden, going on half mile hikes (up and down hills). I am slow but I am finding satisfaction in doing these simple tasks.
Chapter 2:
          The year is over. Twelve months of taking an unknown, new drug. I learned I was one of only 40 people that have taken this medication - worldwide. The total results are not in as of this date (October 30, 1999), but I did not gain in anyway from this program.
         I did learn that one lady got much better, but no one knows for sure why. They do not know if it was the drug or that she went into remission. No one else got better, and some of us went backwards.
In spite of the nausea, headaches and etc., I feel it was worth the effort. If I did not try, I would always wonder, what if?
         I have started a new program as of September 15th. Again, it is a new formulation called - Procarin - and is a cream applied with a patch to the skin. You put on a patch with cream for 8 hours, remove that one and put a new one on for the next 8 hours. Then while sleeping you use none at all. The few people I have had the opportunity to discuss this with, have all gotten better in various degrees. After six weeks, I am seeing subtle signs of changes.
         It is now November 21st, 1999 and I have quit using Procarin. It did not work for me at all. And, I found that I now have sores where I placed the patches. And on top of that, the sores have spread on my arms, legs and lower back. Not pretty, nor do they feel that good.
         I still feel it is worth experimenting. Nothing ventured, nothing gained. I am considering going back to Germany and having a new exam there. Thanks for reading this. Would appreciate any comments. I am willing to discuss all aspects of this program with anyone interested in learning more. Hangeth in there, for more info -