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.

8 Responses to “The Last Entry In The Game”

  • Anon:

    I went through this about five years ago…very similar symptoms. Oftentimes I would be using the computer at work and trying to click the mouse, and my arm would suddenly fly forward. Very weird. The feeling of being suffocated by quicksand was common too. I also had prickly sensations around my left ankle. These things would worsen and improve, but the ones that remained were the left foot drag/drop while running, heat intolerance and hyper-reflexive joints (all hallmarks of MS). I had an MRI that showed no lesions at all but the neurologist suspected a benign form of MS that was unlikely to get any worse, so I got off lucky, i thought. My own primary care doctor was really doubtful that I had MS, though. In my particular case, the worse symptoms all went away when I stopped running so many miles (I know no one likes to hear that) and also when I avoided hot weather. Thankfully these days everything has gone away (other than the heat intolerance) — I hope your issues ease off as well.

    • Flo:

      Anon, thanks for sharing your experience, so weird with the mouse deal and the quicksand feeling had to be so scary. It’s fascinating the amount of different flavors neuro symptoms can come in. I guess we’re pretty complicated beings. :) Also, that you didn’t have the obvious MRI is interesting.

      Sending healthy vibes to you with many great, unencumbered miles ahead.

  • rovatti:

    Hey GIM –

    I think MS is a good possibility (much better than Lyme).
    A neurologist (probably with a repeat MRI) should be able to get to the right diagnosis at this point, as your condition is not so subtle as it was last year.
    Hopefully answers will come soon and relieve some anxiety.

    best,
    – rovatti

    • Flo:

      Thanks Dr. Rovatti, I appreciate and respect your opinion greatly. I think you’re right about fresh MRIs, that it’ll be a different story now,too. It better! I’m going to explode if this question mark continues much longer. :)

  • Ewen:

    Good luck with the doc visits Flo. Thinking of you! Happy you were able to see the neurologist — I’m sure he’ll get to the bottom of it, and so good to have that video to show him. Take the ‘before’ one too!

  • fimmx:

    Hi Flo, I’ve been following your blog for what feels like forever, back from before RWOL melted down. You have been going through these trying times with such grace, I don’t have the words to describe my admiration for your sheer guts. You are one tough chick to have hung in there with such tenacity. I would have given up and curled into a ball a long time ago. I hope this time around you are able to find the answers, and more importantly are able to find definitive treatments. Words, and at that rambling ones, are inadequate, but my best wishes to you! For continued strength, for a solution to the medical mystery and an answer.

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