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.
Below is a summary of my MS pain/medication experience and management. For those of you who have been following me, you know that pain is my most significant symptom. For the first five years of my MS progression, it was strong and increasing, which is why I was constantly increasing the medication dosage and always looking for something better. You should also know that I have had painful problems with my C-spine, independent of the MS, including a C-spine surgery in year five (and a misdiagnosed L-spine surgery in year two).
As one doctor from Stanford said, anticonvulsants have strong side effects. However, we use a cocktail of two (or more) of them, so we can get the additive benefits with less than additive side effects. Gabapentin (e.g. Neurontin or Gralise) and Pregabalin (Lyrica) are both gabapentinoids, which makes them easy to transition between. Those and Carbamazepine (Tegretol) are all anticonvulsants.
Early MS (1-2 years), increasing pain:
Tomorrow morning, I go in for my last re-vaccination. It's the second monthly booster for measles, mumps, and rubella (MMR). This will complete my recovery and complete the stem cell transplant procedure.
The schedule called for the MMR to take place at +24 months, but I fell behind. For god's sake, who gets measles anymore? Well, never, except for the outbreak going on right now. As soon as I heard about it last month, I got off my ass and took care of business. I surely don't want to be infected with that.
So am I cured? Hardly. This is my personal experience. I think I stopped the MS. But it sure did a lot of damage while it was active. I think the word, "cure" implies a complete halting of the malady AND a complete reversal of the damage/symptoms it creates. Have people been completely cured of MS through HSCT? Yes, there are a few lucky souls. As for me, knowing what I now know, would I go back and do it again? Yes. In a heartbeat.
While HSCT is not for everyone with MS, for many of us, it's still the best option. Consider that I have been off of all DMTs now for almost two years. My brain and C-spine MRIs show no evidence of progression; although, they show no evidence of lesion retraction, either. I've been working out regularly at a gym with a trainer, and that has strengthened me to the point that I don't fall anymore. But my walking still sucks. Maybe that will be the job of the next miracle procedure. I hear they're getting good results with mesenchymal stem cell transplants (MSCT) in Panama...Add a comment
Merry Christmas, everyone.
"Treatment with autologous hematopoietic stem cell transplant (aHSCT) led to a sustained decrease in disability and almost no clinical relapses in patients with relapsing-remitting multiple sclerosis (RRMS) who had failed to respond to prior immunosuppressive therapies."
These are the latest results from an Australian Phase 2 trial. This is clearly consistent with my own results. I can easily imagine HSCT available in the U.S. in just a few more years.
Here on the home front, things are still improving regularly. The swapping out of my Gralise (gabapentin) for Lyrica CR (pregabalin) has really turned into a great move.Add a comment
Today, I got the best news since I got my stem cells back.
It has now been 18 months since my last infusion of rituximab, which was my final "chemo" follow-up from the stem cell procedure. (My MS neuro considers that a DMT.) It has been almost 30 months since I got my stem cells back.
Yesterday, I had a brain MRI, the first one in a year. Today I got the results:
I'm sorry it's been so long since my last update. Clearly, a lot has happened since I last blogged.
I had my third C-spine surgery in April. It was a lot of trauma to endure for a small amount of pain improvement. I've since been to Stanford and Cedars-Sinai pain management clinics. I've had a new MRIs of my C-spine, and I've spent a lot of time enduring pain when I should just be able to live life.
I've switched medications from Gralise to Lyrica to Lyrica CR (continued release). Pain is still the most significant deficit in my daily life, but I did have some beautiful summer days with some decent relief. I think I can alleviate over half of my chronic, debilitating pain if I can get my non-MS shoulder problems figured out. I'm sure there's some MS-related pain in the upper-body region, but I'm uncertain as to how much each source plays off of the other.Add a comment