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.
Finally, I was able to stop taking bactrim and acyclovir. Today was my first day without these antiseptic medications since my transplant over six months ago. Technically, now I'm also able to go swimming, but it's raining. I don't want to catch a cold, so I'll wait for a sunny day.
Recently, I twice read Explain Pain (Butler & Moseley), and I've since finished The Brain's Way of Healing (Doidge). The main premise of the first book is that pain is a sensation which is created in the brain when it interprets neurological signals as being the result of impending danger. Acute pain is a beneficial, logical response, but chronic pain is technically unnecessary because there is no longer danger present. In fact, since "neurons that fire together, wire together," chronic pain is actually learned pain as a result of experiencing it. As the body regularly experiences any sensation, it develops neurons, pathways and synapses to become more efficient at interpreting that experience. While this idea usually works in our favor, (for example, a guitar player gets better at controlling fingers in his left hand) it can also work to reinforce a vicious cycle.
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Two days ago marked my 6-month immune system birthday! Wow, hard to believe I've made it this far. In another week, I'll be able to swim again :).
Yesterday, I did what I hope will be my last MRIs. I did brain and C-spine (neck) MRIs, back-to-back on a GE Magnetic Resonance Imaging (1.5 Tesla strength) machine. MRIs are particularly tough for me, not only because I am a bit claustrophobic. Each one takes about 20-30 minutes, during which you must lay flat on your back, totally motionless. They put a hard shield over your face, which locks your head into position (for upper body scans), then the table slides you head-first into the tube. Most people don't have a problem with this.Add a comment
One morning I was perusing the Post HSCT support group on Facebook, and I noticed that someone had posted this article: Mental Rehab May Reduce 'Chemobrain'. I had never heard of chemobrain, and after reading the article, it suddenly hit me that this was what I had been recently experiencing. I seem to have gotten worse at finding the right words sometimes when I talk, and I didn't know what to attribute this to. Although there is all kinds of documented information about chemobrain, many physicians don't give too much weight to the idea that brain "fog" or memory problems (the list actually goes on-and-on) are the result of chemothearapy, itself. You can read the Mayo Clinic's description here.Add a comment
It was a very busy week. I had my second Rituxan, follow-up dose on Wednesday. That one went much easier than the previous one, likely because I took a much smaller dose of Benedryl beforehand. The Benedryl helps to minimize side effects; ironically, I seem to have a stronger reaction to the Benedryl than I do to the small, 100mg dose of Rituxan. Although I still needed a nap after the infusion, this time I was able to snap back to a normal sleep schedule within a day.
Directly before the Rituxan infusion, I met with my hematologist, Dr. Penn. She told me that my neutrophils are back to normal (these are the body's first line of defense against illness); although, my white blood cell count and platelets are still a little low. Those take months longer to return to normal.Add a comment
Week +16, Day +112. I'm almost a third the way through the approximate 1-year procedure recovery. Here's an assessment of my progress so far:
First off, it's absolutely fabulous to be able to eat fresh foods again (i.e. fruit and salad) and to be able to eat out in restaurants. That has made me feel better mentally. I've also started consuming lots of different types of probiotics.Add a comment