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Published 23 May 2017

Better & Better (Month +11.5)

Things have been going very well lately. I believe that my daily neurostimulation treatments are the main reason, but there are two other things going on, which I can't rule out entirely. I'm also right in the sweet spot from my HSCT recovery, and I have started taking a nerve growth supplement called Lion's Mane. I'm also doing 15-30 minute of daily yoga, and I've made a tremendous amount of progress in loosening up some muscle groups which have been tight for years.

I read about Lion's Mane in the Facebook post-HSCT support group. Lots of people are taking it and reporting good benefits. I know that's anecdotal, but who knows? It might be doing nothing, but I figure it can't hurt.

With the help and supervision of Dr. Thompson at Theramind, I've purchased my own professional-quality tDCS device, and I'm doing hour-long, daily treatments. There seems little doubt that these are responsible for the significant amount of my progress.

I've been back to see my neuro, Dr. Agnew, and he has help me figure out a plan to decrease my pain medications to accompany the new progress. Since my stem cell transplant, my typical pain is significantly less than half of what it was, and that includes during the difficult reductions I've made to medication: each decrease causes an uncomfortable pain surge which can easily last a week.

I've been able to drop Naltrexone (LDN) from 3mg/day to 2mg/day, and Tegretol from 1100mg/day to 800mg/day! After I'm able to sustain low pain for another straight week, I'm next going to attempt to drop my Gabapentin dose from 1200mg/day to 900mg/day. All-in-all, it's going to take 8 months or more to titrate off of all these medications (assuming I can actually do it). Dr. Agnew says to wait a month between future Tegretol decreases.

A few days ago, I had to do some lifting, as I sold one of my large printers. It was a two hour process to disassemble this 400lb beast and help the buyer load it into his truck. I wasn't in pain at all throughout the entire process, but the next day, I did have a little bit of a sore back and increased body pain. I kind of expected that, but there's no way I could have done any of that before my recent history of yoga.

It doesn't seem like my walking has improved at all, but I must admit that I've been focusing my recent attention primarily on drug reduction and yoga. There's also been a six or seven week break in my typical physical work activity, so I've been focusing a lot of time on my health.

I do want to revisit my PA soon to make sure I haven't picked up any bad habits and to have him independently assess my walking. It's just been so pleasing to have been able to start getting off these uncomfortable meds, that there's where I've been focusing my recent attention. My mother says that my speech has recently improved significantly, which I attribute to being on less medication.

All in all, this is a great report to write!

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


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

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