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Recovery Blog

Nerve Decompression Surgery (Month +21.8)

Well, it has been quite some time since I've last posted. This is mostly because there's been only status-quo, which has actually been mostly good. I still continue to heal very slowly.

I'm constantly reminded throughout the day by little things that I can do now, which I was not able to do a year or two ago. Things like extra strength in my legs, better muscle control, better balance, and more endurance give me plenty of positive reinforcement that I continue to improve. 

You may recall that about six months ago, I wanted to start tapering down my daily dose of gabapentin. It's taken me this long, but I'm finally off it completely. Each time I cut the dose, I have to endure increased neuropathy for about a week. But eventually my body gets used to it, things settle down, and I generally feel better than I did at the higher dose.

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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.

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Further Pain Improvements (Month +15)

It first happened around Month +8. I was eating lunch with my attorney and friend. I was in excruciating pain. I had been talking for a while, using my whole body (non-verbal communication) as we generally do when we're passionate about what we're saying. I couldn't tolerate it anymore. I had taken several doses of MMJ. I had to just freeze in place to try to manage my way out of this. 

Then suddenly, relief. Ahh. But this relief sustained for several full minutes. Then more. Then, I got in my car to drive back home. I was still pain-free. Driving & pain-free? That's a first (in several years). This was a discrete, sudden improvement.

It lasted almost three full days. What happened? It was a mystery. Was that my new normal? I needed to recalibrate my mind as to what I could do now, how I could live now. "This is simply unbelievable," I thought. But then I was also being very cautious. By the fourth day, things were back to normal. Damn.

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Significantly Lower Pain (Month +14.4)

For the last two weeks, I've been using a different protocol while doing my daily hour of neurostimulation. I did three months of daily therapy, using tDCS, but I've since switched to "Random Noise, Alternating Current." This has provided me wiith significant relief!

You might recall that I had noticed relief during my first month of tDCS (transcranial direct current stimulation). Well, after three months, I had definitely hit a plateau somewhere along the way. I went back to my neuro-therapist, Dr. Tiff Thompson, and she suggested that I change the protocol to tACS. By the second day, I was already starting to feel the same type of improvements that I was seeing with tDCS in my early stages.

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More Thoughts About MMJ, Meds & Pain (Month +13)

Over the last few months, I've been able to cut my pain meds by half! (See "Decreasing my Anticonvulsant Medication" below)

To this, I attribute three things, not necessarily in order of effectiveness. The first is my continual improvement which began about four months after my HSCT procedure. That was about the time that things really started to improve. I gained back over ten pounds of the 40 pounds I had lost over the previous year. People started telling me that I looked much better.

The next thing is the Neurotherapy I began in early April. I've been doing Transcranial Direct Current Stimulation (tDCS) for a solid three months now. In other posts, you can read about all the work I've done on that front.

The third thing is MMJ (medical marijuana). A couple of weeks ago, I started to experiment further with a pattern that I had noticed. If I used the MMJ less as a reaction to a pain crises, and more as a pain prophylactic, I could nip it in the bud (no pun intended) before it got out of control. 

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