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 met with Dr. Juliet Penn yesterday, a local hematologist/oncologist at the Sansum Cancer Center. She said that my neutrophils and white blood cell count are still a little low, but they seem to be recovering appropriately. I no longer need to wear a facemask when I go out in public, and I can return to concert photography by the end of the month.
She stressed that I still need to be careful, and I should be washing my hands very frequently. I still need to avoid getting sick, and if my temperature rises over 100.5°F (38°C), I should go straight to the emergency room. That would be a sign of sepsis, a toxic response to an infection.
Dr. Penn will be seeing me every two weeks for the next couple of months to monitor my white blood cell count, and she will put in an order to my insurance company for rituximab. Dr. Ruíz prescribes us five more 100mg, 2-hour infusions of rituximab over the next year as a preventative measure for the post-procedural relapse that some people would otherwise have after a stem cell transplant.
The problem is that this medication is very expensive (in the USA, >$10K for one full-dose infusion of the name brand, Rituxan), so there’s a chance the request will be denied. (Each of my follow-up infusions are less than a half-dose.) In that case, I’ll have to travel back to Mexico for these, a pain in the ass, but worth the benefit. (At the time of my departure, I could have purchased all five follow-up doses at the Clínica Ruíz pharmacy for $2100, but nobody in the USA will infuse medication not distributed by a pharmacy.) Dr. Penn said they use a lot of it at the Cancer Center, so maybe a request coming from her office will go undenied.
In the meantime, my neurologist allowed me to increase my dose of carbapazimine (Tegretol) again. I’m up to 700mg/day now, which is a pretty big dose (six months ago, I started with 200mg/day). The dose has been inching up slowly ever since. The first couple of days at the new dose, there was no pain whatsoever, but I was comatose on the couch all day, pretty well unable to work. My body is starting to get used to acclimate, and I’m able to get some work done at the expense of bit of returning pain. I hope a dose does exist under which I both get pain relief and I can function normally. It seems I eventually end up at a higher dose without corresponding incremental pain relief. We’ll see. I’m trying not to need all four of my pain medications simultaneously.
I guess about once monthly, I’ll need to test decreasing the dosage to see if I can tolerate lower levels of medication. You never know, my body could actually heal post HSCT and repair the damage that’s responsible for the chronic pain. That was the driving reason I did the procedure in the first place.
I’m going to the grocery store on my own tomorrow. It will be nice to be back in a normal pubic environment.Add a comment
I’ve been squirting a few drops of cannabidiol (CBD) oil under my tongue, several times per day, and my pain levels are generally down. What a relief. Clearly it’s helping. It’s very minimally psychoactive and not uncomfortably, and not in a disruptive manner; the side-effect is generally greater when I don’t have food in my stomach.
Keep in mind that smoking is literally the single worst thing you can do to your body to increase disease progression in those of us with MS. Smoking is a more common way to get CBD:THC into your body. In my opinion, oils and tinctures are so much more convenient and dosage precise, anyway. When I leave the house, I carry a small (1 dram) dropper vial of tincture in my pocket. It’s convenient, discrete and simple, and it gives me more confidence away from home because I have a tool that can help get me out of a pain crises. It does usually take 10-15 minutes to take effect, however.
I’m going to keep up this CBD oil regimen for two more days, then I’m going to switch to a mixture that’s 2:1, CBD:THC. The latter will definitely have more of a psychoactive side effect, especially at higher doses, so I’ll keep them low. After all, I’m only trying to lower pain in an otherwise non-disruptive way, not experiment recreationally; in the latter case, I’d probably apt for no CBD at all, but CBD is the more therapeutic of the two complimentary cannabinoids. The general consensus is that adding a little THC (tetrahydrocannabinol) increases the pain-relieving aspect of the drug. I’ll test this out for four days and compare.
I should note that I’ve had a prescription for MMJ for a year now, so none of this is new to me. What’s different is that I’m in a much more controlled environment now. I’m going to put my forced isolation and controlled daily routine to some good use and come to some more specific conclusions about controlling pain with MMJ, including dose and mixture.
I went outside today for the first time in a week. I took 50 yard walk to check my mailbox, and it seemed like my walking is ever so slightly improved. It’s difficult to tell. There’s still an inability to control my knee during part of its normal range of motion, but it seems to be slightly improved. I’ll definitely be watching this closely.Add a comment
I thought everything would be great if I could just make it back home to my comfy surroundings back in Santa Barbara. Well, I’m glad I set that short term goal. I’ve been back now for nine days.
I was kind of fantasizing that I’d have some net gain by now, but as I was instructed by Dr. Ruíz-Argüelles in my final consultation, it’s rare for people to notice improvements in MS symptoms so early. 12-18 months is more typical if you notice them at all. Of course, I still believe I will be in that group since I completed HSCT relatively early in the course of the disease.
Recovery has been challenging. Being home is nice, but it’s not the glorious finish I had imagined. I’m still sleeping 10-12 hours per night, and it took all I had to stay home on the summer solstice, while the entire town was partying from sun-up to sun-down. The solitude is tough, too. I feel like I’m in one of those prisons for the wealthy: good amenities, but the fact that you can’t leave is your punishment. I’m having my groceries delivered to me by friends.
As is typical during “the highs and lows of recovery,” my CNS has been doing all kinds of crazy things. Old and new symptoms sometimes make me feel like an alien has inhabited my body. A couple days ago, I experienced brand new numbness in my right arm and hand; I thought I might be experiencing a post-procedural exacerbation. But it went away in a few hours. I went to the online support group, and someone else in my class was complaining about the same types of issues.
My pain has definitely returned to the same levels as pre-procedure. I had my MS neuro increase my carbamazepine (tegretol) by 25% (500mg/day). 600mg/day is the maximum dose, which I’m trying to avoid. I’m also playing around again with my cannabis tincture and CBD oil. They CLEARLY reduce pain levels, no questions asked. I am grateful to live in a medial marijuana state.
My day: eat, work, eat, watch movie, eat, sleep. Boring.
Last Friday, I did blood labs, but I have to wait ten more days to get in to see an oncologist/hematologist. Well, at least I’ll have established a new relationship with an important doctor, one needed for HSCT recovery. Upon her say-so, I plan on resuming concert photography at the Santa Barbara Bowl on July 16th (Day +48). Hopefully, she can find some way to get me my five remaining rituximab infusions over the next year; if not, I’ll have to head back to Mexico for them.
Note that I stopped taking my Ampyra (walking medication) on Day -4, so as not to interfere with myelin regrowth. As far as I know, there is no scientific data to support the idea that Ampyra, which fills in missing myelin gaps with potassium inhibitors, has any effect, one way or another, on myelin regrowth. The fact that it changes the normal body chemistry where myelin is missing, made me a little cautionary. Clearly, I am less coordinated without the Ampyra, though, so I will resume it a week or two before going back to concert photography. Obviously, I don’t want to do anything which could inhibit myelin regrowth. Nobody seems to have an answer on this.
My hair is starting to fill-in, very slowly. It appears that the new hair is pretty much all grey. On my face and head, it’s either clear or gray. It’s probably going to fill in grey. It also seems very thin. I might need to buzz it off once before it’s thick enough to grow out. We’ll have to play it by ear.
I feel like I’m getting weaker, just hanging around the house. Some days it’s really bad. I think I’m going to try to gently easy myself in to some basic yoga. The main problem is still the damn pain; I don’t want to willfully exacerbate it. It’s a conundrum. It’s the primary reason why I did HSCT in the first place. Fingers crossed that it eventually goes away.Add a comment