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.
I wasn’t going to write again till I talked to a specialist but I found something I want to put out there as the final contribution to “Flo’s Theories Of What’s Going On”. I figure I’ll offer up this last piece of potential enlightenment so we can have fun comparing notes after the doc visits, the first of which is next week.
Before I do though, because this is a diary of sorts (and an invaluable one since I’d have forgotten everything otherwise) I must report that this month has been a real challenge. I’ve had constant bothersome symptoms like itchy rashes that pop up and disappear daily, twitching facial bits and more memory weirdness, though I also had an entertaining nerve oddity a few days ago. For about 20 minutes, it felt like I had a hair on my ring finger that I could not remove! What made it particularly goofy was that, along with rubbing the finger to make the feeling go away, I also kept blowing on it as you would an actual hair, though I could see from the start that there was nothing there to blow. I thought that was funny; human nature and its habits. The imaginary hair, btw, pairs nicely with an oddity I had about a year ago when I felt water dripping off my knee, though I was walking outside wearing jeans and hadn’t pissed myself. Crazy shite.
But the worst thing going on with me this month has been depression. I’ve cried 26 of the last 28 days. I’m not a depressed person by nature and have never had such an extended streak of Suck so I don’t think it’s entirely about being scared and feeling sorry for myself (though yes, of course I am doing that, too). I think the constancy and depth of these feelings is actually borne of the thing itself – that it’s just another stupid neuro symptom. So I’m remaining tearfully objective about it. But it does suck.
That said, today I feel much better because I found something last night, a potential name to attach to my movement oddity: Extensor Spasticity (aka Upper Motor Neuron Syndrome). When I think of spasticity, I always imagine someone gnarled up in a wheelchair, but that would be its most severe form. Spasticity is when you lose the correct mix of tension and relaxation to your muscles so they tense up tight, and here’s the kicker: it’s velocity dependent! “Spasticity is highly influenced by the speed with which one tries to move. This means that the faster the message is to contract against the tight muscles, the stronger the signal is to keep them rigid”. That would explain why it only happens when I run and also why, if I’m walking and attempt to dodge across a busy street (I don’t dare anymore) the feeling starts instantly as if I was stuck in quicksand, yet when I go for a run it doesn’t begin until I’ve gone a block or so.
Another interesting thing from the National MS Society’s page about gait is a passage that matches my suspicion concerning my left foot toe-landing: “Weakness can cause problems such as toe drag, foot drop, “vaulting” (a compensatory technique that involves raising the heel on the stronger leg to make it easier to swing the weaker leg through), compensatory hip hike, trunk lean, or circumduction (swinging leg out to the side).” Also amusing that in the last post I mention my spastic arm movement when it just might literally be that.
Anyway, the fact that my movement pattern might be a common thing in the neurological world and that running could actually be a sensible trigger instead of a frustratingly mysterious anomaly makes me a lot more optimistic about my upcoming doc appointments. I’m now more confident that the video depicts more than an uptight chick with a choppy gait and a frowny face and is likely to be something a neurologist will recognize. Thanks again to Thom for taking it and to my friend Dr. Dan for suggesting video in the first place, it’s going to make a world of difference (and already has in my ability to describe and understand it better).
Speaking of doctors, I start next week: Infectious disease doc on Wednesday and then on January 3rd, a neurologist I’m pinning all my hopes on – his specialties are movement disorders and neuroimmunology. I actually tried to see him last year after November’s ER visit because he seemed like the perfect specialist for me, but his office required a written interview to get an appointment and…I failed. Which, incidentally, took the wind out of my sails for pursuing further medical help. But I hold no grudge since “my legs do these weird, stiff baby steps but it only happens when I run” probably wasn’t that convincing a problem. A year later, with more symptoms and a ton more clarity to explain what actually occurs, they let me skip the interview process entirely.
Lyme, MS or Whatever
Back in March 2012 when it started, my neurologist told me that since my MRIs were clear, it definitely wasn’t MS, that visible lesions always precede symptoms. But according to the National MS Society, “approximately 5% of patients with clinically definite MS do not show lesions on MRI at the time of diagnosis. Also, since many lesions seen on MRI may be in so-called “silent” areas of the brain, it is not always possible to make a specific correlation between what is seen on the MRI scan and the patient’s clinical signs and symptoms.” And a few forum searches came up with many people who had clear MRIs at the start.
Not to say I’m now placing bets on MS, but I’m going to release my clutches a bit on the lyme idea because spasticity (if that’s what it is) is seen in 80% of MS patients but only a fraction of lymies experience it. So, if the infectious disease doc says “nope, not lyme” I’ll believe it and trust that the neurologist will get to the bottom of it. Whatever it is, I believe that the answer is ready to be found.
This weekend is the Philly marathon which I’ll be actively avoiding (sorry racing friends, I can’t handle spectating right now) but as a wonderful byproduct, my friend Thom, whom I’ve known online for years but never met, came for a short stay before joining his buddies for a long weekend of race festivities. It was one of those “it’s like we’ve known each other forever” deals where you can jabber all day about the deep stuff. He really couldn’t have come at a better time.
Aside from the sympathetic ear he leant, he helped me out in a huge way today: I asked him to videotape me running and that is what he did.
I’ve known we were going to do this for 2 weeks and have dreaded it the whole time – dreaded seeing what I look like but also dreaded doing the running in the first place. I tried to keep running the last couple weeks so there’d be no break in the routine before taping but my body and mind have given up for now. I simply can’t handle the raw, crappy feeling anymore. I tried twice and stopped after a few steps, turning them into walks. I’m done.
For frame of reference, here’s how I used to look:
Here’s how I look now (don’t worry, just looks like a shitty runner):
You’d have to slow it down to analyze what my feet and legs are doing but what’s interesting is that for many months, I’ve thought the weird gait was all about my right leg but the video shows me avoiding my left heel for the most part, toe-landing on the left foot only, of all things. I’m thinking because the right foot scrapes a bit (footdrop, I guess…feels like the toe “sticks” sometimes) that maybe staying up on the left toe makes clearance for the right leg to follow through, like a compensatory leg-lengthening? Just a guess.
Aside from that, my left arm does a spastic sort of pump staying right in front to match the right leg that doesn’t go back much. And there’s a complete dearth of leg swing and knee lift (the right knee especially appears to barely bend). The intense “smallness” of how my gait feels translates perfectly to how I actually look on the outside. Again, all this is more apparent when slowed down so you’re probably going “huh? just looks choppy to me”.
The stride morphs a lot as the run progresses, btw. We almost did 1/4 mile for the video but there’s no telling what I look like 2 miles into it, I know it feels different as it goes.
I went to the doc yesterday morning before Thom arrived. The appointment started with an oddity: I always have very low blood pressure no matter the scene (doctor’s office, emergency room, hospital stay). The last time I was measured at 92/60, at this appointment it was 155/100! Granted, it’s been a particularly bad couple of weeks both physically and emotionally but those numbers are cray-cray.
The appointment was surprisingly ok, the doctor’s taking it very seriously and is upset with me for not coming in sooner. The downside is she’s not that informed about lyme so the negative test means more waiting for me (it should be noted that she thought I had received both standard tests, though I knew I hadn’t since it’s such a predictable story with lyme. It wasn’t till I inquired about specific results that she realized they’d only done the Elisa test). So more blood was taken for a Western Blot which I’m sure will come out negative as well considering how long it’s been, but also some tests for other stuff, like thyroid function.
She won’t give me antibiotics yet, wants me to see an Infectious Disease doc first, but I can’t get in to see one till after Christmas. She said they’d try to find someone who could see me in the next couple weeks.
As an interesting note, in looking through this blog, I was reminded that I went back to the emergency room last year in November. Lyme bacteria are known to love cool weather. It keeps making more sense since things took a bad turn as October temps dropped. Whatever. November sucks.
My last post received a lot of comments on Facebook. One was from a friend of a friend that simply read “Get tested for Lyme disease.” I summarily dismissed it because if lyme was a possibility, surely those smart doctors would have tested me when I was in the hospital. But I gave it a peek anyway, just to properly confirm that it couldn’t be lyme. Imagine my surprise to find all the symptoms I’ve been experiencing (including things I’d not thought of as symptoms but weird, passing happenings) were all in this list.
Before I go into it, it’s important to note that a few years ago, while living in the Blue Hovel, I found a huge-ass bite on my hip, it was a large red circle (I don’t remember if it had a “bullseye” because lyme hadn’t touched my psyche at that point in life). I always assumed it was from a spider, which made very little sense since it was an urban apartment and I’d not seen any spiders. But I’ve had a few visits to upstate NY where my friends have a house in the forest (and ticks are known to reside). Or locally, Wissahickon or Fairmount (not my usual running route but outside that) could have supplied such a thing. No matter where it came from, I do remember that bite.
Back to symptoms, the major ones I’ve been dealing with are all listed: reduced reflexes, muscular weakness and poor coordination, constant varied joint issues, noise sensitivity, temperature sensitivity (been especially crappy the last couple weeks…it’s 70 degrees in my apartment yet by the afternoon I’m in 2 longsleeve shirts, a fleece shell, fleece robe and sweatpants and yesterday wore a coat on top of all that…crazy shite), a recurring ocular thing, along with a few random symptoms that have been decidedly weird but haven’t lasted long enough for me to dwell on or talk about. But it’s the cognitive symptoms I’ve been sweeping under the rug that are closing the deal on this line of reasoning.
As soon as I saw that, I knew exactly what it was without having to read anything about it because I’ve just started doing it in the past 3 or 4 months. What happens is I’ll be typing and the wrong word will emerge. It’s not a misspelling or the result of fatigue, lack of attention or typing in a flurry; it’ll be a word that’s sort of related but not what you planned. For example, on Saturday I was typing “August or September” but what came out was “August or Wednesday”. Until now, I’d pause for a sec and think “huh, that’s funny” but now I’m taking notes.
Then on Sunday, I was getting ready to go to Lara’s baby shower and pulled out my skinny jeans for the first time this season. I’m not a clothes horse by any means – I basically have 3 pairs of shoes I wear during the winter. Last year I always wore these jeans with a cute pair of North Face hiking boots I’ve owned for 5 years.
But that day, I pulled the jeans from the closet and wondered “now what shoes do I usually wear with these?” I had a sort of shadow in my head and a B appeared that made me think “brown, brown shoes” but that’s as far as it went. I saw another pair of shoes on the floor and put them on.
It wasn’t till the next day when, once again, I pulled the jeans out but this time saw those boots right in front of my face. Suddenly I realized how weird it was that the day before I’d completely forgotten their existence and secondly, that I had so quickly ditched the thought without resolution. A normal Flo would not have left the closet without at least mentally identifying those damn shoes, if not wearing them!
Like I say, I’m just now starting to pay attention to this stuff but I guess it’s been building for a bit. Just a few weeks ago I had a regrettably angry exchange with a dear friend over my shitty memory. I got totally defensive for forgetting something (one of many things) he had told me earlier. I was embarrassed and stupidly got pissed off for feeling stupid. I’ve always had a crappy memory anyway (I joke that it’s because I used to smoke so much pot, though it’s only a half-joke because I was a happy little pothead) but it seems to be morphing into something else.
Anyway, step one is done, I got the lyme test yesterday. I’m incredibly nervous for the results because it’s classic that the test gives a false negative (like 50% classic), especially the longer you have it since the little spiral bacteria will have settled into many hiding places in the body, which also makes it so much harder to treat. Couple that with the CDC having some crazy crap about what constitutes “treatable” lyme thanks to the doctors on the lyme board who have a financial interest in the disease (watch this fascinating free documentary if you’re interested) forcing people to drive hundreds of miles to find LLMDs (lyme literate doctors) who don’t take insurance but will treat you with the proper combinations and amounts of antibiotics, it’s all so incredibly tense-making.
But I’m happy to have started the ball rolling, whatever it ends up being. I should have the test results in a couple days and have an appointment with my GP for Thursday morning. Cross fingers for me.
ETA: Doctor just called, tests were as expected…negative.
This blog is a strange thing, always in the background, a place I used to write a few times a week, so excited by running and training that I’d often formulate blog posts in the midst of a run. Now it sits quietly, a little sad and lonely for having been nearly discarded. I keep thinking I’ll get back to writing regularly when things get normal in my running life, but alas, I’m not sure that’s ever going to be.
I had a couple months of near normal running. It was great and I was even considering a half marathon in the spring. My decision would be based on whether I was running normally by January. The way things were going, I had high hopes that it’d work out. But here I am on a setback again.
In a nutshell, I ran 79 miles in October. I could feel the weird symptoms becoming more pronounced and regular so I did mostly 4-milers and took generous rest days.
But last weekend, I got a harsh dose of reality. It was Saturday and I was on the beginning of a run, nearly at the first mile, which is always hard for me (not in a normal “just need to warmup” way but in the “my body is an unrelated stranger” way – the crux of my situation).
Anyway, my friend Jeff rode by on his bike, though I didn’t see him till he stopped behind me and called my name. When I went over to him he said, “Are you ok? You looked really unsteady there.” This shocked me. Although self-consciousness has been a constant unwanted companion throughout this period, I always want to believe that I don’t actually look like it feels. But I do.
I stood there when he asked the question and couldn’t even speak, I was so upset, my mouth sort of opening and closing like a fish. He asked if it was the same thing and all I could do is nod dumbly.
Flash forward to today, I was at his house (he’s the hubby of my pal Lara) and I asked him to replicate what he saw. Man, that was tough but very important to see. It’s a choppy, odd gate, veering to one side. Now, this isn’t how my entire run is, it always loosens up to some degree (those good weeks were normal for most of the run) and on grass it’s always less stilted, but still, this shouldn’t be a part of any run.
So it’s clear now, I need to see some doctors again. Not emergency room stuff, but a methodical ruling out by whoever will see me. It’s simply too long to have been saddled with this. I’m sure it’s going to take a fat collection of copays to get to the bottom of it though, and since I’m a little broke right now, I’m going to wait a few months but I will get it done.
Until then, I’m at a cross-roads. I’m considering quitting running for a few months. There’s a psychological hurdle to deal with every time go out, especially when it’s bad like this, that just lacing up my shoes is anxiety-provoking. And then if the run is bad, it’s so frustrating and saddening. The relief I feel when I decide “maybe I’ll take today off” is like a heavy weight off my shoulders for the rest of the day. Imagine this for weeks and months at a time.
But the crazy part of it is that I can still get those wonderful portions of a run that make it all ok and give me hope that this thing is just a sometimes deal. In fact, those two near-normal months have left me even more confused than before. If I take a few months off, it could very well be for naught and I might waste time from that improvement curve I was on. What if this current period is just one step back for two steps forward? I just don’t know.
I think what I’ll do is keep on with a few more weeks of 4s, even 3milers, just to keep some fitness up and hope the general status improves. But if it doesn’t and running continues to evoke fear or dread in any amount, then I need to stop. Better not to do it at all.
Tough times, indeed.
I have so much to say that for once, I won’t say any of it, it’s just too much to write. I do, however, want to thank each and every blister that plagued me this summer. In seeking out the cause, I found answers I didn’t expect and ultimately, an understanding of some key aspects of running mechanics I’d often read about but was never able to grasp, particularly regarding stride length, dorsiflexion and footplant. Now I can feel those things. I get it.
I’m now on week 8 of solid, consistent running averaging about 50mpw. A couple weeks ago, I started adding in more pavement which no longer feels jarring or uncomfortable, just a little different. Turns out I didn’t really need a more cushioned shoe, just a more cushioned way of running. A little attention to my calves, ankles & feet along with a huge cameo appearance from my ass have made all the difference. Or maybe my huge ass is the star of this show. Either way, it’s all coming together.