Monday, September 22

Secondary Progressive Multiple Sclerosis


I wish I could tell u that it was simply the lack of exercise in trute OR like last year, was jes ah infection that needed to be cleared up and I moved on. No. Nothing so simple...not at all. I've officially crossed over the line from relapsing remitting MS to secondary progressive MS. the way I've been describing to everyone I've spoken to is "(for me) think about it like a stage 1, stage 2 type of deal". Most (most) patients are diagnosed with RRMS - so essentially the person experiences relapses (exacerbations) for some time and then things go back to normal (my eyesight issues in 2003 (before i'd been diagnosed) and weird happenings in 2007).  About 80% (naturally I would fit into that category) patients with RRMS develop SPMS. The major difference between the 2 is that SPMS patients experience fewer relapses but worsening disability - I really can't think of another relapse after 2007.  The medication I'm on (currently Gilly and in the past Copaxone, Tysabri and Tecfidera) doesn't cure the disease, it slows down the progression so one may presumably argue that had I not been taking anything, I might have crossed over the line sooner than now. 

I actually went to the MSCA on 9/2. Had an MRI of the brain - good news there cuz there's been no change. I'm going to do one of the spine in December and I'm really curious about how that one will look - as much as I would prefer no change, I hope there some kinda explanation for the past month and a half. In light of all my issues, I convinced dr Gilbert to prescribe a bout of steroids - 3 days of IV administration at home. I won't bore u with the steroid stories but they provided some relief altho not as much as the last time as I'd hoped.  Oh I'll tell u this part...the nurse came over on the first day and eventually left after 4 tries to get the IV line in because well the company protocol is that patients must not b stuck more. They sent someone else the next day and the third time was a charm for her. My veins never fail to provide "excitement". Steups!!!

Thru this all, I've been okay - I'm dealing because what other choice do I have? Of course I had to let everybody know and (I think) they're all feeding off of me so we're all good. Hopefully this won't cramp my style and I continue to go out and enjoy life although I've already missed one party (that I NEVER miss) because I jes wasn't feeling up to it. After the party, Assenna actually emailed me to check up on me and make sure I was ok because she I wasn't there (a warm and fuzzy moment for me, I eh go lie) :-)

Sometimes I wonder if I'm in denial about this whole MS thing. Why haven't I gotten angry? Why haven't I cried (because I have it NOT because I cyah play mas)? And then I think, "well. What the hell is all that going to accomplish?" I'll jes get my panties in a bunch and because I'll b stressing, my body will probably shut down and then I'll cyah move and get more frustrated and all that for what? For NAUGHT so best I eh bother. 

So I'm adjusting to this new level and trying to do things as "normally" as is physically possible - altho, it's been tough dealing with my decreased independence - and i'm afraid to try to do things because, well suppose disaster strikes?  I've already bought my ticket for Miami carnival - looking forward to jes being in FL.  This year, the plan was to play j'ouvert instead of going on the boat but I stickin now in light of everything.  I'm still learning this body and what it can and cannot handle - have bout 2 weeks to make a decision.  

I have another update but this post is already long enuf. I gone so!