Friday, July 19, 2013

My Top 5 Weirdest MS Symtpoms

I want to talk about weird MS symptoms, even though it makes me -- an avowed hypochondriac -- a little nervous. Whaaaat? Here's why: in my mind, someone is going to look at my list of weird symptoms and say, "WAIT, Ms. CrankyPants! That's not MS you're describing! Those are all symptoms of [insert hideous, fatal disease here]." And it won't matter a whit that whoever makes this proclamation isn't a doctor, hasn't seen my MRIs or other tests, and could be drunk and/or mentally unstable. Nope! I'll immediately begin worrying that this know-it-all is right, as I've secretly nurtured a fear that I've been misdiagnosed this whole time. Yep, since 2005. Irrational? Indeed!

But I am going to do it anyway, because [insert wobbly voice] if there's a chance I can help one, just ONE, person [orchestra swelling] recognize a weird symptom they've been quietly freaking out about, then it'll be worth it. Okay, that's atcually kind of true, as cliche and embarrassing as it sounds. That's because it happened to me. There was a totally scary symptom I was having, and I didn't feel better about it until I read that it is something that can happen when you have MS. When I read that -- quite by accident; I was perusing this blog, in fact -- I literally sat at my desk and cried with relief. I'm not a big crier, so this was a big deal, but that's how much I'd been freaking out.

Onward, ho! Here are my Top 5 Weird MS Symptoms (and, YES, they're MS -- please, if you like me even a little bit, don't tell me they're also symptoms of something else). Oh, and you can't read further until I remind you that I am not a doctor, so obviously any of the things I talk about below are personal experiences and in no way constitute anything resembling actual professional medical advice:

1. One pupil bigger than the other. This earns the top spot on my list because this is the one that was so damn scary. I'd very recently had a bout of optic neuritis, which was affecting my right eye. Later, my neurologist explained the optic neuritis was why I had that !($&ing big pupil. But that talk didn't happen until a couple of months after I first noticed this freaky symptom. Until I knew it was related to MS, I was a mess. I vividly remember being in the mall one day and stopping at every other mirror to check my pupils. Yep, the right one was still bigger! Forget about being alone in a bathroom. There, I could examine my pupils for as long as I wanted, while imagining the horrible reasons for the different sizes. Even though I was in anguish, I was too scared to go to the doctor -- just in case he or she confirmed my worst fears. Irrational? Indeed! So it was by pure chance that I stumbled across a reference to this phenomenon in the blog I linked to above. The relief was overwhelming. Thank you, Julie Stachowiak. You'll never know it, but you took an enormous weight off my shoulders (and made me cry!).

2. Water dripping on me. This one is more annoying than scary. But I had about a week where I could swear water was dripping on me. The first few times, I looked up. Nope, not raining in my living room! The urge to wipe off the invisible "water" was irresistible. No amount of wiping helped. Drip, drip, drip. Then a long pause. Drip. It was so strange. That little gem hasn't returned.

3. Head zaps. Oh, this one sucked. I was out of town for work when the first zap happened. It was an intense, shooting, split-second pain in the back of my head. Naturally, I thought I had a brain tumor or an aneurysm. After conferring with my neurologist by phone, I went to the ER, where I got a CT scan (so if I didn't have a brain tumor then, just give it a few years what with the radiation and all). The scan showed nothing. But the head zaps became my buddy that week. I could count on one to happen every morning as soon as I stood up from bed. Next one: in the shower, right on schedule. The third? After breakfast. And on and on. When I finally got home, my neurologist ordered an MRI. It showed lots of new lesions, and bloodwork indicated very low levels of Vitamin D. A course of steroids and some mega, prescription-level doses of Vitamin D nipped the zaps in the bud. They've come back a couple of times, but only once or twice, and never for a week. Thank God.

4. Muffled hearing. In the midst of the gross heatwave we're experiencing on the East Coast this week, I've noticed this one recently. If go outside in the heat, when I come back indoors my hearing is muffled -- as if I were underwater. It takes about 10 minutes in the air conditioning for my ever-so-keen hearing to return to normal ("Captain Nap?! Are you vomiting in there?").
"It was Squeaky."
5. Skin burning. This has happened only once, but it was fairly unpleasant. Whenever I brushed against something, or someone touched me, my skin felt as if it were on fire. The sensation lasted only seconds, but it was enough for me to leap away in horror when someone seemed to be entering the Radius of Fire.

So there you have it. Of course, I've had the gamut of more "normal" MS symptoms: drop foot, the MS "hug," fatigue, numbness, memory problems, the need to be always near a bathroom, cellulite*...MS really is the gift that keeps on giving.

Stay cool!

Ms. C-P

*Ignore what I said earlier about not being a medical professional. I've changed my mind, and I've determined that MS causes cellulite.

18 comments:

  1. Oh yes, the beast is a lot of things but it is rarely boring. New sensations, new treats...

    The one which sent me nearly insane was spiders crawling across my face. Teeny weeny little feet tracking across my cheeks. I don't know how often I tried to brush them off, scrub them off.

    And the feeling that my feet were cold and wet. Another thing that I checked (repeatedly). Nope - all in what is left of my mind.

    And if MS causes cellulite I have it bad.

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    1. Yep, blame cellulite on the MS. No spiders (yikes!)...yet. As you say, it's a cornucopia of treats and surprises. Yay! Christmas every day. Kind of. Or not at all.

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  2. Blame MS for cellulite - why didn't I think of that? It makes perfect sense, though, when you think about it. When I was young and healthy I didn't have cellulite, then I got MS and over time the cellulite appeared, thererfore... MS -> cellulite.

    My sensory issue isn't so much burning these days, but I DO have sandpaper legs. When DH rubs my legs it feels like 200 grit sandpaper. Wish it would take the little hairs with each stroke. Fortunately shaving doesn't cause this issue.

    I did once have one leg on fire, while the other was ice cold. The next night the legs switched. I got someone to verity this (my Mom), so I wasn't going crazy. It was MS - The greatest teaser of all time.

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    1. I knew I was on to something with the MS - cellulite connection! Boy, there are some wacky symptoms for sure! Learning some new ones from you all. Fun, fun, fun!

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  3. -If MS causes cellulite, I have it, too.

    I love your attitude, positivity, and humor.

    How else do we survive in this crazy world?

    Thank you for helping others & making them smile :)

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    1. HAHAHA! And...my condolences.

      Hmm. I guess laughing sorta takes away the sincerity of the condolences.

      But, seriously, thanks for the nice comments. I love those things about you too!

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  4. Great blog! I don't think I've had any of those symptoms, so am a little scared now, lol. But! I used to have a sensation of water trickling down my spine, which I always put down to an epidural. But apparently it's an MS symptom.
    I have an odd one at the moment, where my upper body shakes as if my ribcage is being rattled. Most odd. Probably just me.
    x

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    1. Ooh, that shaking one doesn't sound good. Yikes. The water thing sounds like my dripping episode. Fun times.

      Sorry to have scared you! Obviously NOT my intention.

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  5. Damn, you ladies (?, no gents here, right?) are having ALL the fun!! I only have thyroid condition that necessitates life-long medication, an inability to tolerate heat (like those w. MS on the East Coast of the US have been HATING the heat wave, fortunately this week will only be average hot, not hell-like hot) and irritability. And, I do think maybe cellulite is either caused by the malfunctioning thyroid or the medication. Oops, sorry to crash your party! (-: MK (sis of Ms. CP)

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    1. There is a gent or two who pops in now and then. But, welcome to the party! It's a real barrel of monkeys. Must insist, though, that MS causes cellulite. I'm standing firm (HA!) on that one.

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  6. I can explain your "One pupil larger than the other."
    It's "Marty Feldman" disease.

    Does your neurologist have a special red phone (like Commissioner Gordon on Batman) to accept your calls?

    You always make me laugh

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    1. Sock,

      I do have a special line to the neuro and he was none too pleased to hear from me on a Sunday asking about Marty Feldman disease. In fact, he told me his new number is 555-1212. Sounds fishy, right?

      Thanks for the lovely compliment; right back at you!

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  7. I think I'm living one of your hypochondriacal nightmares, seeing as I've now been told I don't have M.S. after all, but maybe something worse... if they can only figure out what it is. But I still share many of your delightful symptoms. Take the oddly sized eyeball. In my case, it was subtle. First I knew of it was my doctor staring at my face and suggesting, perhaps, it might be a good idea to see the ophthalmologist. Soon. Hmmm.... (It since seems to have normalized. Maybe.) Sudden sensations of being burned... oh yes. I've actually looked down at times, convinced I really might see a piece of hot metal against my leg or arm.

    Those zaps I have not had the excitement of encountering. ECH. Glad to hear that seems to be under control! Not so glad to hear there were new lesions. That's not at all nice.

    Ah...Neuro maladies... so much fun to be had! (She says, clutching her muffled, loudly ringing ear.)

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    1. Oh, Ellen, that does sound like a nightmare. I am so sorry you are going through this. Ugh. How frustrating and frightening. I hope hope hope it turns out to be MS. Who'd have thought *those* words would be spoken?!

      I'm hoping you're still working on your darling and clever wee books, and that you are finding it peaceful and relaxing. Sounds like you could use peaceful and relaxing about now.

      Please take care!

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    2. Belated thanks. And thanks for your understanding. I think I'm going to physically attack the next person who tells me what "wonderful" news it is that I don't have MS, but something else. Yeah, whoever would've thought it...!

      You take care too... working full-time... in that wonderful heat... AGH. I hope at least the underwires aren't poking too much.

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  8. I am always so happy to hear another with MS has experienced the dripping water. Many look at me like I'm nuts, MS'experts' too. Funny how we turn on our own...loved this post.

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  9. Went to preview and it disappeared. Anyway. Now I am certain I have MS as I have the cellulite;)

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    1. Cat, I am very sorry, but, yes, cellulite = MS. :(

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