Tuesday, March 31, 2009

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

Continuing with my cavalcade of MS treatment shenanigans...

Methotrexate: Next on the hit parade came methotrexate, a chemotherapy drug (i.e poison) that suppresses the immune system. Methotrexate was originally used to treat cancers, but over the years it's been found to be effective on some autoimmune diseases. The drug is most often taken orally or intravenously, but my neurologist, Dr. Big Brain, prefers to use it intrathecally. Intrathecally means that it's delivered directly into the spinal column, by way of, you guessed it, a spinal tap. Well, really kind of a reverse spinal tap, because instead of taking stuff out, they put stuff in. Either way, it's a needle in the spine. Dr. Big Brain has had much success with hard to treat progressive multiple sclerosis cases using intrathecal methotrexate. I had no such luck though, because my multiple sclerosis insists on sucking great big fat hairy monkey balls. Through the years I've have had a total of eight injections of methotrexate directly into my spine, to no apparent benefit. Hooray for me.

IV Solumedrol: Solu-Medrol is a corticosteroid, commonly given intravenously to RRMS (Relapsing Remitting Multiple Sclerosis) patients for 3 to 5 days, to shorten the duration of MS relapses. Steroids are very powerful anti-inflammatories, and MS relapses appear to be set off by a dramatic increase of inflammation in the central nervous system.

I have PPMS (Primary Progressive Multiple Sclerosis), though. Traditionally, steroids are not thought to do much for PPMS, because progressive MS isn't primarily inflammatory in nature. Instead, some other insidious, mysterious action is at work damaging and killing nerve cells in the brain and spine of PPMS patients. I'm pretty sure this mysterious cause is, at least in my case, an extremely resilient strain of cooties. Back in the fourth grade, I defied conventional wisdom and did not get my cootie shots after I accidentally brushed up against Weird Henry, and now, 35 years later, I'm paying the price.

In the spring of 2006 I had sinus surgery, and afterwards my MS symptoms went into overdrive. I really thought I might be dying. Dr. Big Brain decided to pull out all the stops, and ordered a 10 day course of IV steroids for me, and sent me to the Helen Hayes Rehab Hospital in Rockland County, New York.

Much to the surprise of everybody involved, I responded dramatically to the steroids. After the third day, I started regaining function in my weak right side that I hadn't had in at least six months. Naturally, I was thrilled. You don't realize how much you'll miss being able to use a knife and fork until you can no longer use a knife and fork.

The experience of being on intravenous steroids for 10 days was quite intense. I managed to get about two hours of sleep a night, and that's with the help of chemicals. I wanted to eat anything that came within 5 feet of me, rocks, bugs, and assorted plastic bits included. If my beloved Red Sox would have signed me, I am positive I would've hit 362 home runs during those 10 days.

Unfortunately, the benefits from the steroids proved to be sadly temporary, and only lasted about three or four months. Really, really unfortunately, my extended stint on intravenous steroids led to my getting Avascular Necrosis, a rare side effect of the drugs, about six months after completing the steroid treatments. AVN is a condition in which the blood supply to the bones in your joints is cut off, leading to the death those bones. I have the condition in both shoulders and both hips, which now often feel as if they're made of razor blades. If I were healthy, I would have already had two total hip replacements. Since I'm in no shape to undergo the surgeries and subsequent rehab, I'm left with hips and shoulders that vacillate between intense pain and "holy crap I can't believe how much this fracking hurts crap crap crap" pain. Take my advice, don't get Avascular Necrosis.

To Be Continued...


  1. In spite of it all, you have a delightful sense of humor!
    (aka Centenniel)

  2. I usually received steroids for 3-7 days, when they worked! They tore me up so bad I got Type2 diabetes. Yeah me!