I cancelled the infectious disease appointment. Turns out that for some time now, unbeknownst to me, I’ve been providing a daily positive diagnosis for Multiple Sclerosis right here in the comfort of my home.
You know those itchy rashes I mentioned? I call them rashes though technically they’re not, no bumps or anything, just an itch that travels around certain parts of my body numerous times a day and appears without warning, lasting seconds or minutes before disappearing fast as it came. Until now, I’ve had no idea what they’re about, but on Thursday I learned it has a name “paroxysmal itching” and is a known MS paresthesia symptom (like the more common pins & needles or numbness).
But here’s the twist…
I’m able to trigger an itch-fest myself by doing one thing: getting in the shower. I don’t have to soap up or anything, just stand in hot water and boom, my hips will itch like crazy. I even Googled it a few weeks ago to find out how the hell shower water can give me an allergic reaction but found nothing useful, so I chalked it up to “one of those strange things you live with when you get older”.
What a surprise then to find the explanation, without even looking for it, on the National MS Society site.
Before MRIs, they used to diagnose MS with the “hot bath” test. They’d immerse the patient in hot water and if neurological symptoms appeared, it meant you had MS. This, thanks to Uhthoff’s Phenomenon which arises from heat intolerance, one of the most common symptoms of the disease. It’s still a relevant diagnostic sign, not that anyone’s tossed into hot water these days, but I read of one doc who keeps a space heater in his office to observe/evaluate heat response, and patient reports of it can seal a diagnosis.
Unthoff and I have been shower buddies on and off for a while now – lately he’s with me for every damn shower, the perv. And as expected, upon lowering the water temp, the itch resolves. So, yeah.
It would also explain something that has bugged the crap out of me for a long time. Recall that in my short running life I’ve had 3 race collapses: one in 2008 and two in 2010. The first two landed me in the ER for heat/dehydration, the 3rd didn’t require medical help but felt similar to the other two. The worst incident resulted in an overnight hospital stay. Let’s review that one: It was a 5k for which I took careful precautions by properly hydrating beforehand, wiped myself down with ice cubes before the start plus put some in my sports bra, and midway through the race poured a cup of water over my head. Yet I managed to spend a night in the cardiac ward.
This never made sense to me. None of it did really, one collapse because you don’t drink enough, ok…but 3?! What was I doing that was so different from other people? A normal body slows down, it doesn’t shut down. I can’t help but think that Uhthoff and his heat/exercise gremlins had a hand in it. Really looking forward to discussing it with the neurologist.
One last thing about this. When it first happened, it came to a head the first warm week of 2012 (a fact I always thought pertinent). Anyway, my legs would go wonky, I’d freak out and go home and then, after sitting around for a short while, would test my legs by running through my apartment and note that my legs had returned to normal. After the hospital stay, when I returned to my routine and the “rigor-mortis” leg would intermittently appear in a run, a brief stop on the side of the path would “reset” my leg and I could resume as if it never happened. This stopping has been my reset tool ever since.
Uhthoff’s Sign: neurological symptoms appear as body temperatures rise and recede as body temperature normalizes. That’s been the case from the start.
No Mysteries Left!
my altered running gait
bouts of extraordinary running fatigue
the shower mystery
all my other odd neuro symptoms
the race collapses
Then there’s the progression. Just a year ago, it was still so ephemeral I could reason it away – a December 2012 running log entry says “felt a little oddness but maybe it’s just a quad niggle”. In May I gave up the Garmin so I could take mid-run walks and stops without having to see them, or my deteriorating paces, in my running log. By August, the fleeting “oddness” had become regular spasticity, affecting my ability to run comfortably on pavement and by the end of October, even grass didn’t work.
Add the fact that Late Onset MS is usually diagnosed around age 50 (I’m 52) and most commonly presents with motor disturbances…looks like we have the grand-prize entry in the “Flo’s Theories Of What’s Going On” game. I’m going to try to get an earlier neurologist appt. so hopefully will have an answer before Jan. 3rd. In the meantime, the plan is to remain as neutral as possible and not dwell on it – no sense freaking out till I get a proper diagnosis.