Sunday, August 24, 2008

The Blurred Line

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.



I totally agree with you on this one and I like "galloping MS"! (I still use the term "dropsy" when I can't explain being on or feeling like being on the floor) I think as research continues and PEOPLE continue with MS, we're going to see the disease "Declassified" more and more.
I don't fit into the neatly checked boxes 2006 (3 years after initial diagnosis), I was given the label "aggressive MS" because I didn't fit the categories (not SPMS because no "black holes" yet on MRI, not totally RRMS because nothing controlling the relapses and never quite returning to baseline again, not...blah, blah, blah).

I'm kind of just back to saying I have DROPSY...LOL

Linda D. in Seattle

Jen said...

Hi Blindbeard---

Oh my gosh. I've gotta get the hell off of the computer soon (I'm sucked into blogland again.)

I've read about relapsing/progressive MS, and have mentioned it on one of my pages: relapsing/ progressive MS seems to exhibit occasional flare-ups while all along the progression is continuous.. I guess a hybrid of RRMS and the progressive forms, where the disease causes acute, definite attacks, but no remittance from symptoms or progression. Yeah, this one is unusual.

I know one woman, whom I worked with when I finally got diagnosed, who had benign MS. I felt like I was such a mutant because she was fine to work full-time, and it must have been the Copaxone she was taking. I was starting Betaseron and sick as a dog from it, trying to make it into work and failing miserably. She told me in the 25 years she had MS, she'd had THREE attacks! 2 of them weren't even major. I feel so lucky to have just one big attack a year (RRMS for 10 years now.)

Anyway, before I produce an autobiography here, a lot of times it's hard to tell the exact form of MS a person has. And then some are lucky enough to have clear-cut cases.

Hopefully this comment won't be sent in triplicate....



Denver Refashionista said...

I think they diagnose everyone who has had only one exacerbation with "benign" until they have another lapse. Anne from "Disable Not Dead" said that was her original diagnoses and we all know what she has been through.

My diagnoses is currently "benign" but I don't always feel well.I already have lesions on my brain but I pray they do not multiply. I can do vinyasa yoga and hold a job so I know I'm lucky but I still have symptoms here and there so I would hardly call this "benign."

On the other hand, I know I am quite fortunate to feel good most of the time and to not need injections yet. I see my neurologist in a few months so I imagine that the next MRI is not far away. I am keeping my fingers crossed because once I have another full-blown relapse, they will change my diagnoses. Until then, I try to enjoy every day, deal with symptoms when they arise and take care of myself in hopes I won't have the dreaded relapse.

Jen said...

Denver and Blindbeard---

I started out as mild MS, but I wasn't diagnosed for a long time (7 years.) So I had a somewhat tame, vague, gradual start. My course has been rocky at times (during definite relapses), but somewhat stable during remissions. Like you, Blindbeard, I have a problem with the relapses playing out for 6-12 weeks, like this year. So my beef is that I run out of sick leave/vacation time and have a problem staying employed out in the work force. Hence the disability settlement.

I'm glad that you're out working full-time, Denver. It's great to see people with MS doing well. I adore my own buddy with benign MS, and I know that she has other health issues on her plate: ulcerative colitis, a past heart attack. Isn't that always the way?

Jen said...
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Anonymous said...

Hi i have progressive m.s and am 36 years old. I excersise regularily and follow a strict macro/bitic diet. I thought i was good until i went to the neuro and he suggested i begin drugs called 'methotrexate' i don't want to take them as they are 35 years old and i look at them as being dinosrs of the drug world. If anyone has my 'type' of m.s and has remained drug free please tell me. Anti-drugger