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

35.3 Months

clock

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. 

I sometimes work late nights doing concert photography. I had noticed that when I used the MMJ during a show as a reactionary measure, I would sleep better when I made it to bed and would start the next day off with minimal pain. I began using it differently and getting better results.

To make MMJ a more regular part of my pain medication, I decided to lower the THC potency; I wanted to maximize the therapeutic benefits and minimize the side effects (increase in walking disability, difficulty in finding words, hangover: difficulty in waking up in the morning). Whereas I used to think that the THC was a significant part of the pain reduction, I now favor the CBD component. I have changed my standard mixture from a 1:1 to 3:1 CBD ratio. Pot-heads won't like 3:1, but this is my preferred choice now.

I take a few drops 2-3 times daily, including at bedtime.  MMJ seems to be work better if I use it more regularly. If I sleep well and wake up without pain, it's easy to keep ahead of the pain.

Decreasing my Anticonvulsant Dosage

Lowering a medication dosage that one has been on for several years can be quite difficult. My neuro, Dr. Agnew, told me that anticonvulsants reduce seizure activity in the brain, and now my CNS has adapted to a new equilibrium, which includes the additional chemistry. It took a long time for me to build up to my peak dosage, and lowering that amount requires a slow tapering. A sudden reduction to an established equilibrium can create a painful reaction until the CNS can readjust. Unfortunately, some of my meds come only in relatively large increments. One week ago, I dropped my Gralise (gabapentin) dose from 900 mg/day to 600 mg/day. Regular gabapentin comes in 100 mg increments, but it cannot be combined with Gralise, even though it is the same active ingredient. Gralise comes in 300 and 600 mg tablets.

Everytime I drop Gralise by a 300 mg increment, the percentage change becomes larger, and the recovery more difficult. Last week's drop took about five days to adapt, with the first 2-3 days being very difficult to endure. I basically sat on the couch the entire time. I've come down from a high of 1800 mg/day (a year ago) to the 600 mg/day I'm on now. This is in addition to the high of 1100 mg/day of Tegretol six months ago and the 800 mg/day I'm currently taking (these, I can't lower any faster than 100 mg/month). I've also dropped my LDN from 4.5 mg/day a year ago to 1 mg/day now. I will discontinue LDN in a few more days.

Add up all that medication in my body, and I often felt like I was out of my head, f'd-up. And yet still, I was often in excruciating pain. I feel so much sharper now, and my balance has definitely improved. I hope over the next 3-4 months to cut my medications in half again. 

While I still experience pain daily, it's much improved, I'm on much less medication, and I continue to head towards further improvement :)