Primary Medical Conditions: Multiple Sclerosis (MS)
As my alias suggests, my name is Jess and I have MS. I’m from the east coast originally, living mostly in suburbs of Providence, RI and Boston, MA until 37, when I moved to Maui, HI. After nine years, MS forced my return to the mainland and a cool, but temperate, climate — hence, Santa Cruz!
In my former life I was a psychotherapist; however, due to MS I’ve been retired from paid employment for a number of years. So I volunteer when I can, such as leading Maui’s group for people with MS, being a Big Sister, and working as a volunteer marine naturalist. Currently, I’m an Exhibit Guide at the Seymour Marine Discovery Center, where I get to talk to an octopus, play with hermit crabs and help visitors get close to Swell Sharks!
I do love Santa Cruz: the climate is perfect for me, and the people here have a very similar ‘vibe’ to that on Maui (plus, have you noticed the Hawaiian radio, and the plethora of music and hula events in this county?!). Speaking of music, there’s a ton of Celtic stuff here, too, such as bagpipe and Scottish fiddle concerts and, my favorite, workshops singing Irish Gaelic. The tackier SC stuff holds less interest (I love to walk down to the water, but have yet to visit the Boardwalk, except when watching “The Lost Boys” for the 1000th time).
When I told her about my new job with Granny Purp’s and MGHQ, my friend said, “You get the COOLEST volunteer jobs!!!” Ah, ’tis true.
What the heck’s Multiple Sclerosis? FYI, MS is a progressive, degenerative neurological disease in which the immune system attacks the nerve fibers in the brain and spinal cord. Nerve fibers are covered by myelin (picture the copper wiring in a lamp cord, covered by that rubber sheath), and when the immune system’s attack on any particular spot gets thru the myelin, it damages the nerve fibers underneath. If the myelin tries to ‘scab over’ the wounded area, this shows up on an MRI as lesions (or ‘scleroses’); hence, the dumb name for this stupid disease.
Much like dropping acid on a lamp cord will cause a lamp to misfunction or short out entirely, the damage to nerve fibers causes a “short” in whatever area of the body served by that nerve. That’s why the symptoms of MS are invisible, impossible to predict and vary greatly from person to person. They can be pretty damned bizarre, too!
My symptoms began when I was about 23 years old, but I finally received a correct diagnosis on my 38th birthday. The symptoms that seem aided by cannabis are mainly those of central neuropathic pain: numbness and painful burning and/or tingling and/or shock-like sensations (in my case, the worst pain is waist down, along the sciatic nerve cord), hot/cold sensitivity, spasms and involuntary jerking of muscles, all of which cause insomnia.
My other symptoms include debilitating fatigue, limb weakness, imbalance, cognitive impairment, tinnitus, nystagmus, and sometimes nausea, olfactory disturbance, ‘drop-foot’, slurring and fever. I know it sounds really weird, what did I tell ya?!
To keep the MS from going into major relapse (and to keep myself out of the hospital), I “shoot up” every other day with an interferon. It would take WAY too long to list all the medications I’ve tried for various symptoms, and if I took the time to thoroughly research and/or try all the alternative (mostly unproven) treatments recommended to me, I’d never have time for anything else!
So I’ll stick just to what I’ve tried for my central neuro-pain: Tried and Failed efforts include klonopin, baclofen, antidepressants like zoloft, wellbutrin and cymbalta, all the o-t-c pain stuff, low dose neurontin…also accupunture, chiropracty (though this has helped reduce headaches and skeletal-muscular back pain from a car accident) crystal energy healing (hey, I was on Maui!), raki, feldonkrais…while massage and yoga are otherwise really good for me, they do cause flare-ups in my neuro-pain, so I have to be very, very careful.
In addition to cannabis at bedtime…What’s worked in the past is lyrica and now I’m on higher dose neurontin (these are anti-seizure meds that seem to help calm the central nervous system), and Lidocaine (local anesthetic) patches really help, too (I’d wear an entire wet suit made of that stuff, if they’d let me!). I’m in physical therapy for a broken leg right now, and am using some Pilates techniques that I hope will, in the long run, help reduce the tendency for neuro-pain flare-ups.
Using cannabis at bedtime keeps me from asking my neurologist for a prescription sleep aid; klonopin, valium or another benzodiazepine; or even for an opiate like percocet or vicadin. I’ve tried to keep far away from these classes of meds, due to their extremely high risk of tolerance and addiction.
With cannabis, I get relief from the burning, painful tingling and other aspects of central neuro-pain. I don’t always get sleepy but I am able to get a good night’s sleep, without the muscle jerking and other symptoms waking me up and keeping me from falling back to sleep. I’m wary of using my vaporized cannabis during the daytime, as I’m already dealing with MS-fatigue and mental grogginess and don’t need to add to that. So, I’ve begun to experiment with taking the THC tincture during the daytime (however, my progress with the tincture won’t be part of my Strain Reviews).
Having never smoked anything else, I find smoking too difficult, but I do love my vaporizer (I have an older model, a Vapir One 2.0 or something like that). I don’t use every night, unless I’m going through a neuro-pain flare-up, but generally I use my vaporizer about 2-4x/week before bedtime. I fill the vaporizer once each use, which gives me 6-8 good inhalations before the stuff begins to dry out.
As I said above, I’m experimenting with the tincture for daytime use.