Mission Statement

This website documents one man's quest to cure his MS through determination, perseverance and a little luck.

Although harsh drugs and strict diet were successfully supressing my devestating MS relapses, disease progression was quickly deteriorating my ability to walk and slowly deteriorating my ability to think. The logical solution for me was to try HSCT, which is not FDA approved, so I left the country to do it. This website documents my research and journey to effect a cure.

Time Since Transplant



1136 Days

clock

Two days ago marked my 6-month immune system birthday! Wow, hard to believe I've made it this far. In another week, I'll be able to swim again :).

Yesterday, I did what I hope will be my last MRIs. I did brain and C-spine (neck) MRIs, back-to-back on a GE Magnetic Resonance Imaging (1.5 Tesla strength) machine. MRIs are particularly tough for me, not only because I am a bit claustrophobic. Each one takes about 20-30 minutes, during which you must lay flat on your back, totally motionless. They put a hard shield over your face, which locks your head into position (for upper body scans), then the table slides you head-first into the tube. Most people don't have a problem with this.

 

You have a button in you hand that you can use to abort the scan for whatever reason, but it does take about ten seconds for you to be ejected from the tube, plus another few seconds for the technician to remove the head shield. I needed to do this once yesterday to allow me to sit up and reset shoulder pain. I'm often required to adjust my head/neck position in order to alleviate pain.

These last MRIs will become a benchmark of my brain and spinal cord for my six-month, post treatment, milestone. Although they will be used to compare with my previous MRIs from nine months ago, it will likely be too soon to notice any improvement in MS lesion; that may take another year. The consensus in the post-HSCT, Facebook support group is that doing future MRIs is a waste of money. (As an MS patient, typically, I would be getting two sets per year at $4500 per set.)

In addition to the use for MS purposes, my pain specialist Neurologist, Dr. Agnew, has requested to see my C-spine MRI to examine it for any "mechanical" problems which may be contributing to shoulder pain. He suspects that a nerve root might be being impinged. I think this would actually be a good thing as it would offer additional ways to address the pain. I hope to see him this week or next.