Published 12 November 2017

Looks Like It Worked (Month +17.2)

It's been a while since my last report. Oh, how life keeps us busy when we actually start to get our life back!

So let me just start by saying that I saw my MS neurologist last week for the first time in a full year. He performed a full EDSS evaluation on me. Then he went to jot the results down in his notes. Then he looked puzzled for a moment before he came back to re-measure my left leg (hip, knee, and ankle strength). "Wow," he said. "You're stronger." 

Well, that almost brought a tear to my eye, even though I knew I was stronger. It's just that the last time he made a comment about my left leg was right before I decided that I needed to do something drastic. He said, "well, your left leg is definitely getting weaker." That's what brought me here to HSCT.

As if that wasn't enough of a gold star, he continued. He read off the medication list that the nurse had jotted down. "That's all? No MS medications?" I said no. "That's all," he repeated. "What about Rituxan? Are you still on that?" I told him my last tiny dose was six months ago. "And for pain?" he asked. "These numbers are correct?"

"Looks like it worked," he said.

I was shocked. Of course, those were the exact words I had hoped to someday hear him say, but I guess I never actually thought I would hear them. Dr. West is not a doom & gloom doctor, but it just seemed to be so impossible, considering the ongoing trauma I had suffered for so many years, always seeming to get worse, no matter what any doctor did. I just sat there emotionless because I was truly dumbfounded.

Then he hit me with my updated EDSS: 2.0. Again, I was shocked. But this time, I just started grinning, ear-to-ear. This was an apples-to-apples comparison. The same doctor, sitting in the same chair, scored me a 3.5 about two years ago. And back then, he said I was getting worse.

HSCT improvement so far: 1.5 EDSS points!

This isn't the end of this book, however. I still have about seven more months left in my HSCT recovery. That means that I will probably continue to heal and improve for a while longer. That's great because I still stumble a lot and walk with a pretty severe limp. And while the pain is so much better than it was just a few months ago, there's a lot more it can improve. If it continues to subside, I can continue to drop that nasty medication. After seven months, then I'll get my final vaccinations, and the procedure will be complete.

Right now I'm in a pretty good place. I seem to notice weekly improvements in my condition. I can wiggle my left toes again. You don't know how nice that is until you can't do it. I can engage in long conversations with friends without major pain flare-ups. I can drive more than 10-15 minutes at a time. I can sleep through the night. The world is becoming my oyster again!

Important Timeframes

  • My Stem Cell Transplant Date: June 5th, 2016
  • Treatment duration: 4 weeks
  • Typical onset of disability reversal: +9 months
  • Typical complete recovery from procedure: +1 to +2 years
  • Typical maximum reversal of disability: +2 years

Disclaimer

I am not a doctor. I am a scientist (engineer) who has had MS since March 2013.

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