flora68 wrote:I'm no longer takinganything for MS, nor am I likely to try anything new in the foreseeable future. My course of MS seems pretty stable to me so far, and maybe a little better without CRABs than with. The side effects and potential 30% reduction in future disability just wasn't worth it to me. BTW, my situation may be slightly atypical, in that MS is not my primary health problem (long story). That being said, I am considering accepting an invitation to a program about ANTEGREN next week, just to hear about it, since it was approved by the FDA.
Well, since I posted that bold, uppity plan,
my situation has changed materially. MS-wise, I mean.
Oh, I definitely expected it to recur sometime, of course, and I did
suspect that there might already be some tiny
evidence of new MS activity on a new MRI, if I were to have one. But I guess I assumed that my physical
exam would still be, you know, OK. Or OK enough
. Essentially unchanged. I'd had paresthesia on the left since the beginning, and it just might have gotten a little
So I wasn't worried when I went in to see friendly, upbeat neurologist, "Dr. Smiling Bowtie, the MS Genius"
a couple of weeks ago, mostly
to ask him if he had any valid
reason for me not
to try LDN.
kind of expect a semi-hard sell on Tysabri, because Dr. Bowtie gives talks about it for NMSS. But I was full of positive resolve and sales resistance, since I was determined not
to start any
brand new drug for at least the first year or so, even for MS, as long as my case was basically benign and stable. Knock wood. I was just looking forward to getting started on LDN. But first I also had to make sure that Dr. Smiling Bowtie
thought my RRMS was "basically pretty stable" too, otherwise all my fiendish plans ...
Well, to finally cut to the chase, during the routine neuro exam, I was unprepared
to find myself really struggling with or even flunking
several of the tests I always do OK on, especially re:hand-eye coordination and walking. Wow! And I was really trying too.
Yeah, uh-oh. I may never heel-toe-walk again!
But I pretty much keep off tightropes anyway so who cares? My clumsiness was actually kinda funny, but obviously disappointing too. But Jolly Dr B. reassured me that flunking the 'heel-toe thing' isn't all that meaningful in anyway, especially in my case, with my train-wreck of a lumbar spine. So we blew that part off.
But the hand-eye problems; that's way
above the lumbar disaster level, and couldn't be caused by anything but MS. Ap-cray.
Still it was nothing real dramatic, and it's just one sided (left, my most affected side anyway). But I could see that things have gotten worse recently without my specifically noticing.
So after a lively discussion with the doc, I changed my mind about waiting "at least a year" before trying Tysabri. Things aren't "stable" now, and suddenly, rather than waiting around a year or so, I'm feeling a need to get all the help I reasonably can ASAP! Which means to at least try
Tysabri, assuming insurance will cover it. Still waiting on that authorization. After awhile on Tysabri, depending how things are going, maybe add LDN.
Unfortunately, I didn't get to go to either of the local lectures about it, (I had surgery that day) but I did
read everything I could find about it and related issues for literally hours every day, and still do. (I'm recently semi-retired, so I've got the time, and I read kinda slowly anyway.)
So we'll see what we shall see.
"Life is what happens when you're busy making other plans."