I guess it's been about a week since my last post. I was scared as hell to actually post that one as you could surmise from my reluctance to do so. I'm not superstitious, but as I've said before, let's cover all the 'hexing' things be they praying or voodoo since doing this in the first place was somewhat of a leap of faith. So I've had another really, really good week. The only bad thing I had happen was that I had one day where I went to work on a day I knew would be high stress with literally an hour and a half of sleep the night before. Preceding this treatment, that would have screwed me up for days. After going to bed that night, I felt absolutely awesome the next day. Recovery time from overdoing it that fast? Not before my surgery.
Since I am now talking about things I would normally have been reluctant to talk about that have changed for the better, I want to talk about one of my two biggies. Dizziness. To a non MS'er who hasn't experienced this, it may sound pretty benign. I remember spinning in circles as a kid just to GET dizzy! And as an adult playing in my friend's annual "beer olympics" (I won't go into details) doing that chug a beer and put your forehead on a ball bat, spin around three times and then run! We actually got many laughs from that event watching people wipe out the woodpile, fall into the pool and generally look like they'd just been shot. But to be almost 24/7 dizzy for the last 3 or 4 years? The word funny isn't even on the map. I used to eat with my eyes closed because I was always just eating to not waste away as I was hardly ever hungry anytime but in the morning before things got stirred up. I still have moments where I run into the wall with one of my shoulders by turning too early (once again, fellow MS'ers know just what I'm talking about), but now I just tell the wall to piss off and move on. It used to be an instant trigger for dizziness. So for a few weeks now, I haven't been dizzy, not even really on the day I worked on an hour and a half of sleep.
I actually even uttered on the forum I frequent (ThisIsMS.com) that if this keeps up, I can almost see myself running again. I can't believe I even uttered those words. After 8 years of MS, that may just be wishful thinking because I know there's damage in me, not just inflammation since I'm progressive, but just to even mention it would decidedly not have happened before. I really don't know if this has stopped my MS or not, and won't for some time. However, I do feel it has, to this point, helped me gain back some lost function. And no it's not just the up and down of RRMS. I'm Secondary progressive. I haven't had a Remittance in symptoms for a loooonnng time.
Another really nice thing is that I don't feel so fragile anymore. I used to feel like I was made of glass. Like to hop down a couple of steps would have just made my knees shatter into a million pieces. I'm feeling more solid, and consequently feel much more stable and balanced and able to stand on both feet with my weight distributed evenly between the two. That feels really "good and strong".
So my next stop is to go to Michigan and get my head examined using MRI-SWI that shows iron build up/deposition. They are doing a study up there (but not taking anyone else at the moment) and I called and offered my head up for exam as someone who has had the procedure done. They wanted to see this as they are just taking "before" pictures right now, and this is a chance to see me freshly after the procedure, and then look at me six months from now to see if the new, good drainage will actually decrease the iron deposition. I sure hope it does as you can't necessarily chelate iron out of your body as it's in every one of your red blood cells. I don't know what the outcome of that may be, but at least we would know if it's getting better or worse over time in terms of excess iron in the brain. It will just provide another piece of, hopefully, valuable data. I decided a while ago that I am a lab rat for sure since I already have been a teaching moment in terms of what can potentially go wrong when you ding the spinal accessory nerve and also what to do if you have what appears to be two jugulars instead of "spider line collateral" veins.
So Happy Thanksgiving everyone. I know what I'm thankful for this year. Being able to engage with my family and friends somewhat boisterously and not worry about getting dizzy for one thing. I mean even laughing and 'getting loud' was all it took to get me dizzy before. But having maybe stopped my progression is another thing to be awesomely thankful for.