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've been getting nudged to update this blog. I realize that I've been silent to an almost negligent degree. So sorry about that. I've been trying to move on from being "the guy who did the bone marrow transplant" to just being more of just some "guy."Add a comment
A couple of weeks ago, I had four MRIs: brain stem, C-spine, T-spine, and L-spine. I'll spare the details about the cost and pain they caused me. The great news is that there's no new visual evidence of activity related to MS! (Yes, that's great news; however, even better news would have been a decrease in lesion size or quantity; read on.)
I've had MRIs at annual intervals since I recovered from the chemotherapy given as part of the HSCT procedure, beginning about six months post-transplant. This was my third annual set; however, this was my first set that went all the way from head-to-tail. The tests were done without contrast (no gadolinium).Add a comment
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?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: