A quick of medical update: I'm happy to report that, after adjusting one medications level, I have seen an improvement in my leg function… Still not back to pretrial levels, but I'm now using the wheelchair mostly as a walker…we're taking this as an indication that the negative side effects of the regimen can be reversed! Based on this finding, we're giving the trial a few more weeks and one more round of expert examinations before deciding whether to continue or stop.
Best,
Seth
Seth, I've emailed you before but we never connected. I know you had spoken to some folks at ALS TDI within the past 2 years. I live on the West Coast, and am the Western REgional Director for ALS TDI. I've been following you some and would enjoy talking with you about your protocols, and let you know what ALS TDI is doing. Not sure which drugs (immunosuppressants) you are on, or if you've had the chance to speak with anyone at ALS TDI. Also, there is a protocol that my cousin in Spokane, WA is using that has given her relief, and some functional gain in movement. I am actually going to be in Salt Lake December 20th through the 25th for Christmas. Let me know if you have a desire to meet and talk. My email is mshannon@als.net and my phone is 4156940663.
ReplyDeleteThanks,
Mike Shannon