It's incredible to think that six years ago I didn't know a spinal tap from a beer tap, and if asked, I would have probably guessed that an interferon was a creature from the planet Interfero. My everyday vocabulary was blissfully lacking words such as spasticity, paresis, enhancing lesion, cervical spine, monoclonal antibody, immunosuppression, and myelopathy. As much as I enjoy learning new things, I really would have much preferred being forced to learn firsthand the arcane jargon of, say, "fabulous wealth" rather than "multiple sclerosis"...
I've undergone about 1 billion different procedures and treatments since my diagnosis, and I thought it might be helpful to folks if I related some of my experiences. So, here's a rundown of what I've been through, along with a bit of commentary:
Magnetic Resonance Imaging (MRI): MRIs provide a way for doctors to take a gander of what's going on inside your skull and spine, without resorting to the use of saws and scalpels. It's a noninvasive procedure, but does involve being fed into a very narrow tube (think: coffin) within a gigantic machine, for periods sometimes in excess of one hour. The MRI machine makes extremely loud whirring, clanking, and clunking noises while in operation. Some patients absolutely freak out when in the MRI, due to anxiety fueled claustrophobia. Me, I usually fall sleep. Something about the sterility and isolation of "the tube" and the repetitive industrial noises are kind of hypnotizing, and usually have me examining the inside of my eyelids within a few minutes.
Lumbar Puncture (Spinal Tap): Just the phrase "spinal tap" is enough to make even some of the most stalwart patients need an immediate change of trousers. Believe it or not, I've had at least a dozen spine piercing procedures of one sort or another, and honestly, I've found them to be no big deal. I wouldn't recommend them as a recreational activity, but as far as medieval sounding medical procedures go, I think I prefer getting a spinal tap to having a tooth drilled. There is a little burning pinch when they numb up the area in preparation for the jab, but the jab itself is painless. Thankfully, I've never experienced the dreaded "spinal tap" headache, a side effect that can be caused by a drop in spinal fluid pressure due to leakage from the spinal column in the days following the puncture. The pain from such a headache is supposed to be otherworldly, so my opinion of lumbar punctures might be quite different if I'd experienced one.
Rebif: Commonly referred to by those who take it as "Rebarf", Rebif is one of the interferon drugs given to patients in the hopes of cutting down on relapses and slowing the progression of their MS. It's only effective for RRMS (I have PPMS, which means no relapses), and is thought to work by modulating the patient's immune system. I was put on it immediately after my diagnosis, before it was clear that my disease was strictly progressive. Rebif is an injectable drug, requiring those taking it to shoot themselves up every other day. Being neither a masochist or a junkie, the whole self injecting thing was very unsettling, but after the first few times, sticking myself with needles became kind of ho-hum. It's amazing what you can get used to. The worst part about Rebarf was the flulike symptoms that are a common side effect of the interferon drugs. Given the every other day dosing, this meant dealing with chills, aches, and nausea the day after each injection, three times a week. Rebarf did nothing for me, and I was very happy to be taken off it once it became clear that my MS was progressive.
To Be Continued