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.
My MS still seems to be in "permanent" remission. Both of my recent C-spine MRIs have been "no-change" as far as MS activity goes. I'm scheduled to have my first brain MRI in a year, and I'm crossing my fingers that there's no new activity there, either. I have refused to do "contrast" (gadolinium) since before my HSCT. I don't want that shit ever in my body again if I can help it.
I am behind on getting my last round of vaccinations. I was due at +24 months. I did talk to a friend who followed about six months behind me with Dr. Ruíz's HSCT procedure. Her doctors were willing to check her titers, and they said that she didn't need to redo any vaccinations. I've used that information as a reason to lag, but I will get them done soon. There's little consequence to over vaccinate.
If you count the chemotherapy and rituximab infusions as DMTs, which my neurologists do, then it's now been over a year-and-a-half since my last DMT. In that time there's been no new MS activity. Pre-HSCT, my MS was active and aggressive. I guess you could call that a big success.
I'm still a little depressed whenever I look in the mirror. My left leg now shows clearly visible atrophy. Accepting that is hard. I was an avid runner for 25 years before my first MS attack. Even though the nerves began dying years ago, it took a long time before the damage became visible. I'm not using walking aids yet, but walking seems more difficult than it was a year ago. I think that when nerves begin to die, it's difficult to reverse that trend, even if the impetus is abated. I guess I could have pushed through that problem if I hadn't been carrying the extreme chronic pain burden.
Oh well. I have lots to be grateful for. I can't imagine how much worse things would have been if I didn't do the stem cell therapy.
I must mention that I've been working on a smartphone app, which will help users of medical cannabis select the most appropriate product(s) for their particular medical conditions. More on this later.
I am not a doctor. I am a scientist (engineer) who has had MS since March 2013.