Well, the great news is that I made it past my One Year HSCT Stem Cell Transplant Anniversary. That’s right; my immune system is now one year old!
Today, I’ll give a summary of the first year of my recovery.
The trip home from Puebla, Mexico was difficult and awkward. I kept my face mask on the whole way, except to eat some pre-packaged food (totally sterile), drink some bottled water, and to wipe my face a couple of times with a sani-wipe. One advantage of wearing a face mask is that nobody talks to you; albeit, everybody looks at you as if they’re trying not to look at you. Oh well, with a covered face, they don’t know who I am.
During the first couple months, I had friends shop for me and drop the food on my porch. I kept things ultra clean. I went out once every couple of weeks to do my shopping, and I wore my face mask and thin, latex gloves. The thought of touching all those things at the grocery store made me nauseous. I became an “anal” clean-freak for a few months, always carrying hand sanitizer in my pocket and refusing to shake hands or hug anyone. Most of that OCD-ness has subsided.
I completed five light, bi-monthly doses of Rituxan chemotherapy since my discharge from Mexico. They got easier and easier to do, with the last one requiring only a couple of Tylenol to tolerate. It had taken a full six months before I was able to get Genentech’s purse involved in the process. I blame the Cancer Center of Santa Barbara for this delay. They dropped the ball because I was not an official cancer patient. I did get a big apology after the year of doing business with them, but they’ve now owed me hundreds of dollars which I advanced them for my treatments. The money has since been reimbursed to them by Genentech yet not returned to me. Their nurses and doctors were all great, but their administration is like dealing with used car salesmen.
During the first few months of my recovery, I became used to all kinds of random things suddenly going wrong with my body. The recovery roller coaster is no fun ride, but it’s not the most difficult part of the treatment. Random pains and numbness, nights of severe cramping, sleeping 10+ hours per day, a plethora of daily medications; I’m glad that part is over.
There’s been no new MS activity! My +6 month MRIs showed no new lesions, and I’ve had no relapses. I can only assume that +12 month MRIs would show decreased lesions. My body is much stronger than it was a year ago, and I recovered about 10 pounds of the unintended 40-pound weight loss I experienced since they diagnosed me. My body seems to be happily adjusted to this new “standard” weight, even though I haven’t been this thin since I was a teenager.
During the random times when I would get moments or days of reduced pain, I spent time on a treadmill, learning how to walk properly again. I also spent three days per week at physical therapy for a full year (six months before HSCT, then six more months after month +2). Sometimes the pain was unbearable, but I pushed on whenever I could.
I’ve re-immunized with vaccines for DTaP, Influenza, Polio and Hep B. Next week I’ll get a pneumococcal vaccine, then in another year, I’ll get measles and mumps vaccines.
Around month +10, I started Neurotherapy in the form of Transcranial Direct Current Simulation (tDCS). This has been very successful at reducing pain. My first couple weeks included Pulsed Electro Magnetic Frequency Stimulation (pEMF) with the daily treatments. My pain levels are typically about half of what it was prior, and that includes a reduction (so far, about one-third) in my pain medications. Being able to reduce the medication dosage (and the accompanying side effects) is also highly appealing and worth sustaining some of the pain they address. I continue to do Neurotherapy daily with my own machine.
While I feel we have successfully halted my MS, and I have a well-functioning, replaced immune system, I still have some pretty severe damage left in my body from when the MS was active. My two worst problems are: 1) neuropathic pain, especially in my left shoulder and arm; and 2) disability in my left leg, which makes walking awkward and difficult. These are both due to nerve damage in my central nervous system. My next worse problem is balance, but I’ve noticed some improvements lately in that arena. I have noticed a significant decrease in right leg burning and in the pins & needles I get in my left hip. Most of these began after starting Neurotherapy.
I appreciate the improvement in pain levels, but current amounts still make it difficult to function normally in social situations. I can often tolerate 30-60 minutes, but things usually start to decline pretty abruptly at some point, and what I need is 10-15 minutes of alone time, sitting in a comfortable chair so that I can reset. During this period, so that I can recover, I need to keep my chin down, neck flexed about 30 degrees. Any sustained neck extension, beyond 10 degrees flexed, will slowly build pain until it finally gets out of control. Talking to tall people is at best uncomfortable, unless we’re all seated.
I continue to keep hope that pain will continue to improve throughout the rest of my recovery (about another year), through existing ancillary treatments (like the Neurotherapy), or via new treatments coming down the pike, such as new medications which might help regrow damaged nerves.
I spend a lot of time solo in my living room and office, but my job does take me out public settings a few times per week. While getting out is painful, it keeps me from turning into a hermit, which is entirely worth the cost.
I’ve now been on the Autoimmune Protocol (AIP) diet for over two years, but I do allow myself now to eat small amounts of white rice and white rice noodles (which are non-paleo). My neurologist says that he wants me to continue the diet for another year until my Stem Cell recovery is fully complete. Hey, what’s another year?
I am not a doctor. I am a scientist (engineer) who has had MS since March 2013.