Mission Statement

This website documents one man's quest to cure his MS through determination, perseverance and a little luck.

Although harsh drugs and strict diet were successfully supressing my devestating MS relapses, disease progression was quickly deteriorating my ability to walk and slowly deteriorating my ability to think. The logical solution for me was to try HSCT, which is not FDA approved, so I left the country to do it. This website documents my research and journey to effect a cure.

Time Since Transplant

33.5 Months

clock

woman holder her neck in pain

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.

After cutting my final dose, I began noticing significantly increased shoulder pain, a pain I've been dealing with for a good three years now. This pain usually prevents me from driving or even walking. I can find relief by remaining completely still, sitting with my head supported, flexed to the right.

Formerly, before the HSCT, that pain had typically been convoluted with all kinds of other central nervous pain. Now it was more regional and less full-body neuropathy. As explained by one Stanford neurologist, when one nerve gets noisy enough, it can trigger a multitude of painful sensations throughout the body. I feel so much better now that I'm off the gabapentin that I wanted to address this beyond conservative treatment.

I went to see my neurosurgeon, and he advised me to do surgery. He's now the fourth doctor (three of them neurologists) who concurs that I have a bulging disc, compressing my left C4 nerve, resulting in this debilitating pain. He says that I need a C4 nerve decompression surgery, more precisely, a foraminotomy. Flexing my neck to the right takes pressure off the disc bulging against the nerve, which is why it gives me relief. I've been holding my head this way for so long that my PT says my spine and neck muscles have adjusted asymmetrically. Time to start fixing all that.

I've actually already had two C-spine foraminotomies (for other nerves), both very successfully performed by the same surgeon. I'm scheduled to go in next week. I'm pretty excited about the idea of fixing this problem once and for all. About three-quarters of all my pain stems from my left shoulder, and I believe the majority of that is coming from outside my spinal cord. That's the pain we are addressing here. It's independent of damage to my CNS caused by multiple sclerosis.

I don't want to get too far ahead of myself here, but if this surgery works out the way I think it can, I can soon start to taper off carbamazepine, too. Wow.