Lately I have been pondering where exactly my disease fits within the accepted categories of Multiple Sclerosis (I know that doesn't have to be capitalized, but to me it is so prevalent in my life that it deserves the distinction of capital letters). I do not fit neatly into any of the 4 recognized types of MS and can't believe that I am the only one who has this problem.
Benign: Dare to dream! I envy those who fall into this category. I can't imagine this disease being so mild to be almost nonexistent. Wouldn't life be sweet if MS reared its ugly head so rarely as to be easily forgotten and not have the daily struggle to keep up with life? I just cannot relate to this at all.
Relapsing-Remitting: I am currently in this category but do not fit the general description of RRMS, which I will elaborate on further down.
Secondary Progressive: Who amongst us does not fear this? It scares me to think of steadily going down hill with little to no meds to help slow the decline. I hated Novantrone, and we all know it is a limited-time option. On Novantrone I was so sick I really thought I was going to die. I crawled to my computer to delete things I didn't want anyone else to ever see, drug my sick butt back into bed and laid there too sick to move for several days. I didn't lose a single hair, which irritated me beyond belief (I was ready to lose my hair so I could wear my mullet wig sideways in public). My neurologist said I was lucky and many people would envy my full head of unruly hair. I was stuck in the house for 2 weeks because I couldn't be around people -- the whole thing sucked eggs. I'm not sure I have the words for the horror I feel for Novantrone.
Primary Progressive: This is seen more is people who develop MS at an older age. Obviously, having been diagnosed at 30, I didn't fall into this category. I don't think there would be much gray area if one did. The only good thing about this (to me) is that it either is or is not and I am not. But those who do have it have my unending sympathy, empathy and every other -pathy that you can think of.
Here is where I get confused: The book I am reading right now, albeit sluggishly and between other more interesting books, breaks down the categories in a way new to me. The book was first published in 1988 and last updated in 2008. It seems practical and no nonsense, which is just how I like it, being a literal and detail orientated gimp. They give case studies and in one of them they note that the woman was having attacks and not fully recovering from them which moved her into SPMS category. If this is true than I am SP. I have never fully recovered from any attack and my attacks last weeks, sometimes months, which is another thing they say marks her as SP.
I can't remember where I saw/read this, but somewhere I ran across a controversial category called Relapsing-Progressive -- has anyone else heard of this? The criteria for said category fit me to a tee. Your baseline becomes progressively worse and you still have attacks. Even on Tysabri I am still having a slow breaking down. I have this constant nicking away at me that is usually so subtle I have to really think about when I first noticed it. I am interested in others' take on this. In the first year of being diagnosed, and having a very aggressive disease, I commented to my mom that I had a case of the, "galloping MS." I thought it was funny -- me being a history geek and enjoying applying outdated terms to modern things -- but it made my mom cry. So now I only refer to my "galloping MS" privately or to my neurologist. Maybe that should be a new category. I like it better than the other options.
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