I felt so defeated when I wrote Tuesday’s post that I honestly did not expect to write again for weeks but I’ve now got a lot to say.
First off, I’d like to talk about the neurologist I saw. While he was very generous with his time, I don’t trust anything he told me concerning MS. Granted, he’s not an MS specialist, he’s a Parkinson’s/movement disorder guy so he shouldn’t be expected to know everything about everything, but he said some things I knew to be patently false, that contradicted common knowledge found on the National MS Society site (or any MS website) and refuted so many of the real patient stories I’d read. No sir, my crazy itching is not coming from sensitive skin, the heat connection is very real and certainly not “rare” by any stretch of the imagination (this was so blatantly bogus it was kinda shocking), the fact that I’m able to take 4 mile walks should not in any way diminish what I’m dealing with (“You walk 4 miles? That’s a lot! Most people don’t do that”), and “Can’t you change your route?” is not an acceptable answer to my telling you I can no longer even run across a busy street.
Then there are the MRIs. The doctor didn’t go over the reports with me, I had to ask for copies as I was leaving the office. While the brain MRI says there are no lesions to suggest MS, there are hyperintensities and my cortical sulci are “slightly more prominent for stated age of 52″. Hyperintensities can appear with age but in 2012 I had none, nor was my cortical sulci noted, so something has changed from then to now and I would have wanted to at least talk about it. I considered calling the doctor to discuss it but realized he’d just leave me infuriated. Dr. Google tells me the cortical sulci prominence means my brain is slightly more atrophied than should be for my age – the sulci is where our memories are so that sucks, but I’ll patiently wait for the next neuro to get a real explanation. Because there is definitely going to be another neuro.
Huge thanks goes to my dear friend Simon who insisted that this doctor telling me “there’s nothing more I can do” when he hasn’t done anything aside from ordering 2 MRIs, is not supplying a satisfactory outcome and that I need a second opinion. I almost resisted Simon’s advice, preferring to believe “doctor knows best” but the situation rankled and the more I thought about it the more I was sure Simon was right.
So my next neuro appt is with a bona-fide MS specialist, because if I’m going to be told yay or nay it will be from someone who knows their shit. My appointment’s not till mid-April but hopefully I’ll get an earlier cancellation.
I Saw A Hepatologist Today
Speaking of cancellations, I got in to see a hepatologist (liver guy) today to check out the MRI blob and by wonderful coincidence, it was the same doctor from the hospital 2 years ago who fought valiantly (though for naught) against the neurologists’ diagnosis of blood stealing. Having him on the case is fantastic not only because I trust the guy but because every time I have to tell my story it’s like having to recite War & Peace, so convoluted, complicated and long as it’s become. To my joy, he remembered the situation very well, saving me a lot of explanation, though he was certainly interested in where it’s taken me.
My liver is surely A-ok, it felt normal to him as he was thumping me and since I’ve not had any liver-related symptoms, the CT scan he ordered and the liver blood tests are just to be on the safe side.
And Then There Was Saturday: New Symptom Complete With Evidence
My life has become rather twisted. Instead of dreading new symptoms, I now embrace them in the hopes that they might bring me one step closer to a diagnosis. The best kind of symptom supplies photographic evidence and on Saturday afternoon I hit the jackpot.
As mentioned, for the last 3 months my exercise has been limited to long walks in the park – I haven’t cracked a real sweat since my last run in October. But on Saturday, after being stuck in the house for a couple days due to negative windchills and ice I thought it’d be fun to do a little exercise DVD from my pre-running days, something super easy and totally low-impact just to work up a sweat again.
So I pulled out “Walk Your Way Slim”. I’m admitting this most embarrassing detail, not to impress upon you how low the mighty have fallen but to let you know how little it took for the following events to occur.
I start the workout and a couple minutes into the warmup, it comes to my attention that the toes on both my feet are completely numb. I look down (I’m doing this barefoot on a yoga mat) and note that my toes are so ghostly white, they’re almost green. I stop a moment to feel them expecting them to be frigid but they’re warm so I figure this is just a passing oddity and will right itself once I’m warmed up. But it doesn’t.
For the entire 45 minutes, they stay numb, white and damned uncomfortable but I’m entranced enough by the oddity of the situation that I press on to the finish, though stopping a couple times to take photos. By the end of the workout, my toes are still white and numb but now they’re also cold to the touch. From warm to cold while exercising…must have been Opposite Day.
Afterwards, I sit down and watch my toes turn purple before settling back to normal. A quick Google search (and confirmation today by my hepatologist) leads me to Secondary Raynaud’s Phenomenon – “secondary” because it’s stemming from whatever has been ailing me and of the listed possible causes I’m picking this one “Diseases and conditions that directly damage the arteries or damage the nerves that control the arteries in the hands and feet”.
But wait, there’s more.
During the workout I started itching. That in itself is no surprise since raised body heat is a guaranteed trigger for it, but upon finishing the video and for the next 6 hours solid, I experience the worst non-stop “Fuck, when is this going to end?!” misery itching. Around 7:30pm it settles down in magnitude and number of locations but remains at a high level until I go to sleep around 2am. Even the next day, I was still itchier than usual.
The moral of this story is that “Walk Your Way Slim” packs one venomous punch. But really, that I’m messed up. It was like I OD’d on sweat and had a hangover the day after. And while I totally see the humor of this, it’s a real pain in the ass that exerting myself in this most minor way results in such a dramatically uncomfortable outcome. Putting aside what this might mean as time goes on, for the moment I’m very happy that it happened. More grist for the mill, as they say.
I saw my neurologist today to discuss the MRIs; there are no lesions indicative of MS which is a huge relief. The MRI report mentions a suspicious thing on my liver and recommends a CT scan so I’m seeing a hepatologist in 3 weeks but I’m not too concerned, it’s probably the hemangiomas I’m already aware of.
The neurologist said my liver would not be the cause of the neurological symptoms but he also said there’s nothing he can do at this point to help me. He said he could order a spinal tap but even if it showed something unusual, there’d be nothing to connect it to so it’d be useless. He brought up the possibility of getting a 2nd opinion but said it’d be a horizontal move really, which I get since there’s nothing that points to anything here so I’m to see him again in 4 months, but just for the hell of it I guess.
So while I had a moment of jubilation that this wasn’t MS, the fact is, I’m stuck with something that continues to get worse. Towards the end of November, the weird legs that used to happen only when running started occurring on my exercise walks – a brisk pace could bring it out. But now it’s more constant and sometimes even my regular “to the store” walks feel off. Guess I’ll need to be falling down or needing a cane before this gets figured out.
And that is it for probably a while. I’m tired of being a downer and posting this frowny shit over and over. I’m also not going to link posts to FB anymore, my Wall looks like a blog morgue these days, so if you want to be alerted to the next post, best subscribe. Speaking of Facebook, today I removed myself from the last 2 running groups of which I was a member. I can’t run and don’t know when or if I’ll be able to again. Imagine that.
Until the next time…
Late night edit: I’m going to get a second opinion.
Sunday edit: New developments, chunky post coming up this next week…
I feel sorry for my marathoning friends whose races were cancelled this weekend due to the storm, though I’m grateful as hell to Mother Nature for dumping her first snowfall on Philly yesterday. Because of that, I was able to grab a cancellation spot today at my neurologist’s office.
I don’t have much to report yet, other than I really like him. He spent nearly 2 hours with me and was super easy to talk with. Interestingly, he thought my running video looked like Parkinson’s, though he said clearly I don’t have that. Also interesting was that I was so focused on the running gait and the random constant itching episodes that I almost neglected to tell him the more “normal” MS-type symptoms (the feeling of water dripping down my leg, the phantom hair on my finger and some consecutive mornings waking up with pins and needles on my left arm). Once I told him that, he went from questioning the idea of MS, “though likely a spinal cord problem” to it suddenly becoming more likely.
I’m to get MRIs of spine and brain and possibly a spinal tap. I’d love to get all this done now, but he suggested I wait till my new insurance starts in January since the tests will be way cheaper (thank you, Obamacare!). So, tests at the beginning of next month, then I’ll see him again on January 27th.
Aside from that, I have knee reflexes again which is heartening since they’d been completely absent before, though the blood pressure is still weirdly high so I guess I need to talk to my GP about that. But the main thing is that I feel a zillion percent better for having talked to someone – my mind has been such a dark, scary hole these last few weeks.
And that’s it for now. Have a happy holiday season, folks. I wish you all peace in every shape, form and thought and I’ll see you in 2014!
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.