Monday, March 30, 2009

MS and Me: What a Treat(ment), Part One

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


  1. Luckily(?) my introduction to daily injections came from fertility issues and then the spine got injected for an epidermal at birthing, so my introduction to the progresses had a good and positive outcome - my boy/girl twins. The LP did not bother me at all. Nobody warned before what could happen and maybe that helped. I am PP, Rebif made me feel icky, Novantrone made me vomit and I believe sent me earlier into menopause with hot flashes a little earlier. Nothing worked (I am PP), but if anything comes up for us, I hope I can feel bad for hopefully a good outcome.


  2. I went through all three you have listed. MRI, no big deal. I just thought of Spock being jettisoned into space and then to a new world. Spinal Tap, I got the headache. Now that was unpleasant to put it mildly. And finally, Rebif, no side effects at all but no effectiveness. Doctor said I could stop because I am PP and it was just like shooting water. Aarcyn

  3. The MRI usually has the same affect on me, other then the fact that about 1/2 way through I inevitably have to use the little girls room~and spend the next 30-45 minutes fidgeting. As for the spinal tap, the first one I had did cause the dreaded headache and boy was I sick. The second one I had (cause they messed up the first) I was armed with a bunch of help from others such as lying still longer, drinking caffeine in large amounts, etc. and low and behold no headache.

    As for the so called ABCR drugs, well I have not found one yet that didn't send my body off the deep end. If only I would have the "flu" like symptoms. The last drug I tried sent me to the hospital and darned near killed me. I am in the rarity in this I am told....

  4. I can relate partially to your experiences and that's why your commentary always elicits a giggle or two from me. But my familiarity with the spinal tap has been related to birthing. No familiarity with any of the disease modifying injectables since I am PP. So for it's worth, I've been spared from some of the common treat(ments) and annoyances. (aka centenniel)

  5. MRI- I am claustrophobic, so I get valium before an MRI. This makes me a very happy boy, and so I look forward to MRI's now.

    Spinal Tap- My first two were not painful that day, but resulted in bad headaches the day after. Very debilitating. I learned the tricks since then. Then on my most recent spinal tap the guy was a rookie. He poked and poked and every time came up dry. Each time he poked it sent an electrical shock up my spine. I swore that day that I'd never get another (we'll see, woman say that during each childbirth, and often come back for more).

    Rebif- no, but I did do Copaxone for 6 months. At the time there was a PPMS trial (I am PPMS) for Copaxone, and so I thought it was worth a try. No flue like symptoms, but it is an everyday injection, and hurts like a bee sting. Everyone at MSworld said it would get better with time. It never did. One day the trial results came back negative. I said to myself, "well my personal trial is not over yet, so I'm still going to use it." That night I got ready to inject and could not pull the trigger. That was my last day on Copaxone, and I don't miss it.

    Your list of acquired vocabulary words is quite funny. Until I read your post I had not remembered (not to be confused with mis-remembered) that all these terms are recent additions to my vocab too.

    Good stuff.


  6. Made me add Spinal Tap (the movie) to my Netflix.