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The first experiment, Dec 20, 2013

After studying the options and risks involved, and discussing the matter with the anesthesiologist, we decided to perform a conservative test in order to see if there were any noticeable effects to warrant possible further studies. On Dec 20, 2013 I received 220 mg of EDTA bound propofol during an one hour infusion. 

I remained conscious during the entire infusion. The first observation was that the fasciculations, which had continued uninterrupted since July 2011, disappeared after 10 minutes into the infusion. They did, however, return within an hour after the infusion was stopped.

During the infusion, I had moments of clearer speech than my typical current level. That does, however, occur from time to time and may be related to my head position and/or muscle relaxation.

The most objective observation was the effect on my UMN symptoms. About and hour after the infusion was over, I tried walking and noticed that the hyperreflexia that usually makes up half of my walking problems, was gone. The loss of strength did however remain. During the following 3 days, I was unable to produce the ankle clonus, which typically is very prominent and takes effort to prevent (rather than to initiate). The degree of hyperreflexia is very difficult to quantify so I am not able to estimate how long the improvements lasted.

The most long-lasting effect was the improved swallowing. Before the infusion I kept choking on food and eating had become somewhat stressful (I do not have a PEG yet so I take all my food through the mouth). Swallowing problems disappeared completely for 11 days and I was able to enjoy a proper Christmas dinner without spoiling the mood by constant coughing. The swallowing started to gradually worsen from day 11 on, but even at the time of writing this - 17 days after the infusion - my feeling is that I do not choke as much as three weeks ago. 

In conclusion, the conservative amount of propofol did have a definite effect on the UMN symptoms that lasted clearly longer than the substance remains in the body. On the LMN symptoms I did not notice a significant effect.

The Second Experiment Jan 8, 2014

Based on the experiences from a couple of weeks before, we did not change much. The dose was slightly higher - a little under 300 mg within an hour, and this time I did fall asleep. Everything went smoothly and professionally again. The effects were somewhat smaller than on the first time, but qualitatively similar. Swallowing went back to practically normal for a few weeks.

The third experiment, May 14, 2014

The third experiment was made along the same lines as the two previous ones. The amount was 240 mg of EDTA bound propofol with one hour. I remained conscious during the entire infusion. The first impressions go along the same lines as on the second time: nothing earth shattering but swallowing feels smoother. I will write more after a few days when I hopefully have a better idea of the results.