Check-In (Year 5.2)
I've been getting nudged to update this blog. I realize that I've been silent to an almost negligent degree. So sorry about that. I've been trying to move on from being "the guy who did the bone marrow transplant" to just being more of just some "guy."
Eight years ago, I saw myself as "the guy whose whole life changed due to a sudden medical problem." I bumped around for almost two years, constantly worsening until I was finally diagnosed with MS. Before the diagnosis, I surely thought I was going to die soon. When I was diagnosed, I had no idea what MS was, but at least I had new hope because now doctors could treat me, and hell, I had modern medicine to cure me. That new hope didn't last too long. Now I was being bounced around from drug to drug with little improvement. I thought now I was going to be kept alive longer while I continued to suffer.
Then I found HSCT as a real, potential solution. I had new hope. My title changed to "the guy who was going to go overseas to get a non-FDA-approved, experimental stem cell transplant." I held that title for only three months until, for a month, I became "the guy who's in Mexico getting a non-FDA-approved stem cell transplant." People made up their own reasons why the FDA hadn't approved this procedure. The most common misinformation I heard was that it was a moral issue due to the killing of a fetus or something like that. In the meantime, I suffered. I had to explain that my transplant was autologous and was still experimental in the US because of the mortality risk.
When I returned, I continued to worsen just as I was warned. It took six months before things turned around, and I was improving beyond the condition I was in before I left for Mexico. (It takes about six months for your body to recover from the procedure itself, let alone the condition you're attempting to treat.) For 2-3 years after the procedure, I became "the guy who did a bone marrow transplant and is having a miraculous recovery" People who I hadn't seen in months due to my isolated recovery (sort of like the CV lockdown), suddenly began telling me, "dude, you look great—for a while there, you didn't look so good." How refreshing that was to hear, but I was still the "guy,"
Finally, I made the decision not to be any "guy" but just me. Unfortunately, that included letting go of some relationships and this blog. I just let them all go so that I could focus on myself. I needed psychological help to move on. I wanted to focus on the same problems that "normal" people do. I've come full circle, so I'm putting this blog to bed. I have some parting words:
First, HSCT is a serious and dangerous procedure. I don't "recommend" it to anyone. If you have severe, aggressive MS, you need to come to your own conclusions about whether this procedure is right for you. I might be able to answer questions, but that's all. Second, since I did my "transplant," as I call it now, several great MS "drugs" or immunosuppressants have come to market. There are currently many less dangerous, very effective options available that I did not have when I chose HSCT. I hope these medications prevent people from finding themselves as desperate as I once was.
Next, my pain has become much more manageable since I've figured out the nuances of using my medications most effectively. For me, there's significant pain reduction when I dedicate time to a regular exercise regimen. I like to work out vigorously for a short duration, and I need to do that about five days per week for maximum benefit. Unfortunately, this is seasonal for me. I like to swim (there's no penalty for falling down in the swimming pool!), which, where I live, is not conducive to doing in the winter. I might move to improve this situation; that's how important it is for my well-being.
Lastly, some people decide to end all MS treatment and monitoring after they complete their full procedure period (two years following the transplant date). My doctor and I have decided that the potential cost of doing this, of not discovering a new MS flare-up, is too expensive. I had annual MRIs until the two-year period, and now I will do them indefinitely every two years or more. My next one is due this winter. I may push it until January for insurance reasons; I will post the results here.
That's all. I hope this has been uber-informational. Don't hesitate to shoot me a note if you have a question.
- 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)