To Flare Or Not To Flare

I love my neurologist dearly. She's one of only about 4 doctors I would (and have) trust with my life. But I think she's dead wrong on two counts:

1. She can't find any quick and SOLID proof that there is something else going on with me than just MS that is slowly but surely eating my life away from the inside out.
2. She's diagnosed me as remitting/relapsing MS even though I have never had any clear-cut "remission" of symptoms nor even any clear-cut "flares" for that matter, other than the bout of optic neuritis last summer.

Until now.

When the shit hit the fan with my body a couple of years ago, it started as a slight weakness in my right arm and leg. It was nothing that affected my life in any way, shape, or form other than being an irritation and a "subjective feeling" of being weak when my examination and testing routinely came back normal, with the exception of the times I've had "reactivation mono," which is essentially - and most people don't know this until they're afflicted - the Epstein-Barr virus you contracted in high school comes back to haunt you. There are markers in your blood that show you've had the virus, and some of those titers will never go away, ever, because you DID have it. Others of these markers go up and down, indicating a reactivation of the virus in your system.

**Quick aside here: It's fascinating to me that EBV has long been considered a culprit in the pathogenesis of MS, that it can reactivate at any time, particularly when ill or stressed, etc. (the exact same factors that can exacerbate an MS flare).

Anyhow, 1 year 11 months ago (dear Lord, has that much of my life been eaten up by this disease already???) I developed SUDDEN onset of PROFOUND weakness on my entire right side, which progressed over the next few days to include my entire left side and then started moving up to begin compromising not only my facial muscles - I developed facial droop highly suspicious for stroke or at least Bell's palsy and could neither eat nor drink for days, yet my doctor couldn't get me in any quicker than 2 weeks and ER doctors had previously dismissed me as a fake - and eventually my muscles of breathing and bowel and bladder function.

I was FUBAR'd for about a week and a half. Of course, by the time I got in to see my primary doctor, most of it had resolved except for the right-sided weakness, which was dismissed as "stress" and would best be treated under the care of a psychiatrist. (Yeah, she went there. And bought property. That's why I don't see their office anymore.) After that, I was pretty consistent until last July when the optic neuritis destroyed the vision in my right eye, eventually leading to my diagnosis of MS. All this time, though, I never had a "remission" as is defined by those who define such measures (usually for insurance billing purposes). After the optic neuritis, though, I started declining - gradually - and never having an acute "flare" (proven by MRI scans that no new active lesions were identified) but continuing to become progressively weaker and more fatigued and confused and depressed and at times maybe even clinically diagnosable as psychotic. But I was still classified as RRMS instead of - what in my opinion should be - secondary progressive MS or perhaps even primary progressive.

MS does not define me as a person, but it's a really big fucking irritation. I've tried to be all "yeah, whatever" about this whole thing, accepting and dealing with it and moving on with my life and all that happy horseshit. I ain't playing that game anymore, though. After only 23 short months, I am ready to take my marbles out of the circle and stop playing - and kick sand over the circle just because I'm pissed off about losing.

I had another of my epiphanies on life, the universe, and everything. It came yesterday, Saturday morning, after my dad came to my house to make sure I was up for work on time and found me on the floor of my office, unconscious and unresponsive. The pisser of it was, he actually walked in on the SECOND episode. I woke up around 7 a.m. with a massive Charley in my left calf that wouldn't let go and got up to put some Ben-Gay on my leg. As I was reaching up to put the tube back on top of my desk so the kids couldn't get it, I passed out and fell on the floor. I came to a little while later to my daughter sitting on the floor next to me, laying on my face and crying because I was someplace she knew I should not be and not responding. But I couldn't getup. Nothing worked right. I've been constantly dizzy (like 100% of the time, even moving my eyes in my head makes me keel over) for about a week now and even when I did finally get my arm and legs to obey in some fashion and tried to get up, the dizziness decided to call in unconsciousness for backup to keep me on the floor. Eventually I was able to speak and tell dad "no" when asked if I wanted an ambulance. He woke DH up, who saw me on the floor and started screaming, which scared my daughter even more, but he picked me - in all my bulk, even though I weigh as much as he does or more - off the floor.

I was fucked for the rest of the day. I'm still fucked. I always knew I was not long meant for this world, but I can say now that I see the end in sight and it really pisses me off. It pisses me off about losing and it pisses me off about giving up.

But maybe now someone (in the medical profession) will listen to me when I tell them something is wrong.