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.
I haven't had my bloodwork done in over a year now. After the HSCT and the six extra bi-monthly doses of rituximaub, my white blood cell (WBC) count never got over 3,800/ml. Low normal for me is considered to be 4,000 - 11,000. I was told that this was not dangerous because my neutrophil count was normal, and they are the body's first line of defense against infection. They also told me that some people who do HSCT never return to 4,000+, so 3,800 might be my new normal.
Well, surprise. A recent blood panel now shows my WBC to be 4,000. It just goes to show that it can take a few years for a body to return to normal. Still, it does continue to heal after HSCT, hopefully indefinitely. There's no doubt that I'm better in many ways than I was a year ago. And a year ago, I was better than I was a year before that. How many people with MS can say that they are slowly getting better?
As far as the pain goes, I don't think the Lyrica CR is helping much anymore. I decided to try something new. I am hypothesizing that part of my shoulder/arm pain is due to tightening muscles from a vicious cycle of nerve/muscle interaction. I tried adding baclofen to my medication cocktail, but I couldn't tolerate everything together. I cut my Lyrica CR dose by a quarter (82.5 mg), and now I can tolerate the addition of 10 mg baclofen. I'm even more fatigued now, but I do think there's better relief. I'll maintain this change for a month, then I'll try to drop another 82.5 mg Lyrica CR and replace that with another 5 mg baclofen.
I should mention that UCSF Pain Management Center performed two diagnostic nerve root blocks on my cervical medial branch nerves. The hypothesis was that these nerves were being irritated, triggering pain. The first diagnostic was positive, but the second was negative. So this whole line of reasoning was a bust. Too bad. It was expensive and painful. But even if a diagnostic test like that fails, you still learn something. Those nerves aren't the cause.Add a comment
I recently filmed a lecture for the local MS group. The MS genius, Dr. Timothy West, gave a fantastic 30,000 ft view of the world of multiple sclerosis from his point of view as a practicing clinician. He covered all the new technologies, current treatments, and the myriad of choices he must make in treating patients.
Someone in the audience asked, "what about stem cell replacement?" There were two interesting parts to Dr. West's answer.
First, he said that a patient's own assessment of his illnesses is much worse than how a doctor perceives it. That sounds plausible to me, almost to a frustrating level.
Second, he said that doctors practicing western medicine have an obligation to the Hippocratic Oath, which basically states, "first do no harm." According to societal norms, it's better for a doctor to do nothing and watch his patient slowly die than to intervene with a powerful drug and accidentally kill the patient. This is true even if the drug has a good chance of curing the patient and potentially saving his life. Doctors don't have the option of risking life if there's a less dangerous way. Think about the liability here.Add a comment
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