Thanks, Sally! I've learned not to get my hopes up too much about things that are supposed to make my life easier. If they work.....great. If not....no big deal.

I have to wonder if I'm SPMS at this point. I was diagnosed about 7 years ago, but my first "official" exacerbation was maybe 5 years before that. My first exacerbation was several days of numbness around my upper lip, cheek, and side of my nose. A spot maybe as big a a 50-cent piece. That's all.

Virtually none of my initial symptoms were sudden or huge. Instead, they were fatigue, imbalance, strange sensory stuff, "brain cramps", heat sensitivity, etc. I've had a few pseudo-exacerbations, where the same symptoms kind of flare up--usually due to stress or other physical problems.

For the past 5 or 6 years, no new symptoms, just the same ones getting slowly worse. Every time I go to the vet (what I call the neuro), he asks me about my symptoms and I say, "A little bit worse. Not a lot worse, but worse." Every time.

If someone hadn't seen me for 5 years, she would probably notice that I've gone downhill, but not fallen over the cliff. I have more pain, my balance is worse, my muscles spasm more, it takes more effort to climb steps, I tire more easily, I venture less far from home. A lot of the things I can't/don't do anymore are due to the ever-increasing fatigue.

I've not had anybody other than my daughter comment about my seeming "worse". Nothing surprises me that people say, and when somebody says something dumb, I try to think of all the dumb things that I'VE blurted out. I cringe when I remember.

I can still walk, drive, see, and have rare moments when I can get the Jeopardy questions before the contestants. But when I stand beside the me of 7 years ago, I've surely progressed.

I was Dx'd in 2001, and although my MRI picture hasn't changed all that much over the years (and I have had LOTS of MRI's - at least once a year) I do notice a deterioration.

I started out bad - then I got a lot better over time, but in the last year or so, I have been falling more, more tired, more uncoordinated, less 'graceful' (read this as frequently walking like a circus clown) more brain-foggy, more 'tingly' and numb, and more nerve-based pain.

I don't know - I have wondered about the secondary progressive thing - but when that happens, don't you get LOTS more lesions? I don't appear to have more - although there is quite a large spinal one that we didn't notice before.

After 11 years, it is only reasonable to expect that things would start to happen - after all, I am out of warranty now. Lets just hope the goods were from a quality supplier in the first place

Cheers

Lyn

I ask my Neuro every time I see him if I've progressed to SPMS and he always says "no". But my disability number keeps increasing. It's 6.5 now. I think he wants to keep the medication avenue open in case something comes on the radar that might help me. If he dx me as SPMS I probably won't qualify for any of the current meds. Just my thoughts.

!!!!!

Thanks for making me laugh! I love your sense of humor!!!!!!!

Tammey

i guess i've been "lucky". i was dx'd in '03. by '05 i progressed enuf to have to quit my job/career and was granted ssdi.

however, i still drive and mostly walk with a cane. i've never had ON or a real flare. but, i can't sit or stand or walk for very long. i'm crazy heat intolerant and still suffer from fatigue.

it's mine but i'll take it the way it is.