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!
- 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
I am not a doctor. I am a scientist (engineer) who has had MS since March 2013.
- AHSCT and Progressive MS. Conflicting Studies (Year 6.4) - UPDATED
- Check-In (Year 5.2)
- No New Activity on MRIs (Year 3.6)
- Bloodwork Back To Normal (Year 3.3)
- Why Neurologists in the US Don't Recommend HSCT (Month +35.8)
- Better Pain Management (Month +33.6)
- Final Re-Vaccinations & The Medical Cannabis Primer (Month +32.9)
- "Sustained Decrease in Disability" (+30.6 months)
- No Progression Seen on MRI (Month +29.7)
- Cruising Along (Month +29)
- Nerve Decompression Surgery (Month +21.8)
- Looks Like It Worked (Month +17.2)
- Further Pain Improvements (Month +15)
- Significantly Lower Pain (Month +14.4)
- More Thoughts About MMJ, Meds & Pain (Month +13)
- +1 Years and Counting! (Month +12.6)
- Better & Better (Month +11.5)
- Major Pain Improvements. Finally. (Month +10.6)
- DIMS, SIMS and the Medicine Cabinet in the Brain (Month +9.6)
- Sliding Sideways ( Month +9.2)
- Pain, Pain, Go Away! (Month +8)
- Doctor: MS in Remission! (Month +6.75)
- Neuroplasticity (Month +6.1)
- Hopefully, My Last MRIs, Forever (Month +6)
- Chemobrain (Month +5.2)
- Kickin' and Screaming (Month +5)
- Month +3.7 Progress Report
- Fresh Foods Welcome! (Month +3.2)
- Thoughts About Pain (Month +3)
- Making Good Progress (Week +12)
- First Followup Rituximab Infusion scheduled (Week +9.5)
- Walking Towards Improvement (Day +54)
- Neutrophils Recovering Appropriately (Day +39)
- Less Pain Lately. Horray! (Day +25)
- The Highs & Lows of Recovery (Day +22)
- Homeward Bound (Day +12)
- Treatment Complete (Day +11)
- Final leg of the procedure (Day +10)
- Healing fast! (Day +8)
- Neutropenia (Day +6)