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Published 12 March 2017

Sliding Sideways ( Month +9.2)

As they have been throughout the last couple of years, things are remain complicated.

Since my last post, I've had a friend whose ongoing pain issues may become an MS diagnosis. And there's two dear family members with serious cancer diagnosis. After some deep soul searching, I've been able to consider my own illness with a bit more perspective. I have to learn to be more humble about my own problems.

My leading, ongoing issue is still pain. According to Dr. Ruiz, the window of opportunity for the maximum amount of healing (or symptom reversal) after HSCT for MS, is months 9-12. Today, I'm at month +9.2, which puts me squarely into month 10, about halfway through this window. I fear it will pass me by while I'm stuck on the couch minimizing my pain.

A couple of weeks ago, I suffered a scary little bout of temporary blindness. It started with an inability to focus, which was followed by tunnel-vision, until I was effectively blind (less than 25% of normal vision). It only lasted for 2-3 minutes. I used to suffer these episodes of optical neuritis regularly, two years ago, but this was the first one since I changed my diet and started on Tysabri (since discontinued). It hasn't happened since, so I'm just going to pretend like it never happened. It's not uncommon to suffer random episodes of former MS symptoms after HSCT for up to a year or two post. These random spats can go on indefinitely if triggered by a cold or other illness.

I'm currently at a 1200 mg daily dose of Tegretol (carbamazepine), which is the suggested maximum. My pain neurologist says that I can go over the limit if necessary (my liver tests normal), but I want to try something else. A couple posts back, I wrote about Transcranial Direct Current Stimulation (tDCS). I'm going to give that a try. I was hoping to avoid the expense, but I now find myself anxious to get started. Just as I had/have a lot of faith in the HSCT process, I am now in the same place with tDCS.

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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