Thursday, 12 September 2013

Develop all the symptoms!


I saw the above picture over on Carrie, from Just Mildly Medicated's, Facebook page today and thought it couldn't be more perfect for my current situation. If you follow me over on Facebook you know that despite Jeri's (my pacemaker) best efforts I've still had a dive in my symptoms. This is not to say that Jeri isn't doing her job. She's been a trooper, and I haven't had a collapse since she went in. Funny how a regular heart beat helps. But alas even Jeri is just not equipped to fully deal with my body.

I've had a step-wise progression. Ie I deteriorate for a while, then that stops, I become kind of stable for a while, and then I start to deteriorate again, until the next plateau, and on it goes, ad infinitum. It's been my regular pattern the past 7 years. But something definitely changed back in May. Not only did my heart decide to become a couch potato, but a host of other symptoms popped up, some new and some with an increase in frequency. As I said, "I think I may be in the "fall screaming" stage before I hit the next step plateau."

Luckily, I also had a neurology appointment coming up. Instead of my normal 'Take in my 3 Top problems', philosophy for medical appointments, I ended up with 7. Then as my appointment progressed and she started asking the right questions (because she's an ace neurologist) and Eunice (my last remaining, and thoroughly over taxed, brain cell) finally looked up from her latest edition of Woman's Day, more problems came to mind. 

Thankfully, instead of relying on my inadequate descriptive skills I also came armed with a host of photos and videos to show what my body does in these bad patches. Even more thankfully, my lovely neurologist was stoked that I had a multimedia display worked out for her, on top of my nicely set out, dot point, list in my notebook. (We may just share a love of organisation and structure.)

Thankfully again, or not depending on how I am reacting to the news in a particular hour of the day, she actually had an pretty clear idea as to why I can't walk periodically, and why the left side of my face (not unlike my boobs and sad derrière) heads south, and why my breathing gets difficult periodically, and why my meds are getting stuck in my throat, and why I can no longer squish a lemon, even with 2 hands, and..... 

You see not only do I have, as she put it on my referral for a biopsy of one of my facial nerves (that's right, they are going to cut another fricken nerve out of my body), "a very rare autonomic disorder" (so rare it doesn't even rate it's own name, though I did suggest FUBAR to her again. I do hope it takes off.) I have also developed another rare, this time neuromuscular, disorder. Because one just wasn't enough. No way, no how, baby. I'm gunna get me all the symptoms! Oh, and did I mention they are going to CUT INTO MY FACE. 

The culprit this time being Myaesthenia Gravis, or grave muscle weakness, for the less Latin-minded. Well at least that's the odds on favourite. The Black Caviar of all the potential neuromuscular junction disorders. I'll let the interested read up on it in their own time, as really I can't be arsed facing it enough to write about it in detail at the moment.

And after a a quick squizz of Medline the likelihood of having either of those rare disorders is indeed very rare. But to have them both together, to have The Universe insert the pointy end of the pineapple in my nether regions once more, and with great vigor, is pretty much rare to the power of infinity. Damn you body and your anal tendencies to do everything 110%! 


So now I am waiting on the confirmation from antibody testing and await the joy that will be the facial nerve biopsy. Admittedly there are a range of treatments, none of which are pleasant, (Mestinon and I did not part of good terms after our short-lived daliance) but it is manageable. YAY another no cure, progressive diagnosis. Just what every girl wants to hear.

And all my autonomic symptoms, small fibre, and now large fibre neuropathies are spreading/multiplying like randy little rabbits all over this sack of meat I call, my body (or Arsewipe, depending on the level of maturity of my coping skills at the time).

Oh and did I mention they are going to CUT INTO MY FACE!

Michelle :)

But I did get to up my pain meds. And my neurologist said I looked pretty, and she liked my skirt. And now every time Mr Grumpy moans about something I simply yell "WELL AT LEAST THEY'RE NOT CUTTING A NERVE OUT OF YOUR FACE", which frankly is the best come back EVER. So you know it wasn't all bad.

PS Go on over and visit Carrie over on Just Mildly Medicated, love her. She's a woman after my own heart. Taking the piss out of illness. Cracking sense of humour. And she understands and shares my love of both Game of Thrones and The Walking Dead. Oh, and she has a cape!

14 comments:

  1. Thanks for the shout out! Oddly enough my mom, fellow Dysautonomia FUBAR, also has Myasthenia Gravis. I think we should take a poll on what illness sound best when said like a spell from Harry Potter.

    I am totally with you on the best come back ever! I am now saying AT LEAST YOU DON'T HAVE AN INFECTION DEEPLY EMBEDDED IN THE LAYERS OF YOUR SKIN. I'm happy it's getting better but boy I'll miss that line ;)

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    1. OMG how bizarre that your Mum has both, Carrie. I think we could put both together and repeat 3 times dramatically, that sounds like a super powerful 'suck it' Harry Potter spell.

      Love your come back, not so much the reason you have it though. YAY that it's getting better :)

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    2. I have dysautonomia and my dad has myasthenia gravis. Wonder if this is the progression for me? I think I feel worse than him. He's 85 and I'm 52. He gets up early and goes in to work (his own bus.) everyday and I can't get in before 11:30 a.m. and am ready to pass out within an hour of sitting at a desk.

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  2. whatever life throws at us.... good luck with the face op. humour is the way to go.

    ive a little addition, a hernia. not just a normal protruding stomach one, oh no, had to locate itself in my brain!!! so when upright the little buggar falls down onto my brain stem. thanks eds. x

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    1. Pfft, regular hernias are for Wusses! Seriously though Em I'm really sorry you're dealing with it. Is it a chiari malformation or something else? I hope they can find a solution for you. Seems like we've both been collecting disorder and symptoms for years now :(

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    2. yep good a good old CM.

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    3. Damn, I'm so sorry Em. Are they taking a wait and see approach or are you looking at surgery?

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  3. Aargh Michelle, glad I finished making my fruit salad before I read your blog, or the pineapple would have had to go in the bin!! But I completely get the analogy (had to check the spelling, I kept trying to put a 3rd a instead of an o !!!

    There is a young lady, Michelle
    who's "companion", Bob, makes her life hell
    but each new 'prickly pear'
    that he tries to shove 'there'
    is no match for this feisty young gel!

    xx Tricia

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    1. Phew, glad you had your fruit salad first Tricia ;) But I do really love your Limerick! I think I'm going to print that out xx

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  4. I have a similar comeback for my Ex as well. He goes on and on blaming his diabetes and I get to "casually" mention that while his sugar imbalance kept him from paying the bills I was in organ failure for 12 years. And he kinda missed that part. Shuts him the HECK up every time, no yelling needed. Poor Rusty, not another surgery? Well keep us posted and we'll do our best. I mean come on aren't you and I a bit young to look like Nicole Kidman? Do we really need that kind of face lift? (hugs)

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    1. Never challenge a chronically ill chick. We have all the best comebacks! Not keen to look like Nicole really, not that I can move my facial muscles all that well anyway, but 'Startled Gazzel' is not really the look I'm going for ;)

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  5. I have you listed on my blog as a blog I follow. Granted, not many people follow my blog, but it's the thought that counts, right? :)

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  6. So this is a horribly old post, but I'm dealing with POTS and now some no-fun muscle weakness that doesn't really fit POTS but might fit MG.
    My question is, did they find MG? I have heard it is hard to diagnose. I follow you on Instagram and you haven't mentioned it.

    Ps, I do know of one other person who has Dysautonomia and Myasthenia Gravis. --> http://kindofbroken.blogspot.com/

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    1. Hi Ashton. No I didn't end up with a MG diagnosis as I didn't have either of the markers. However since I wrote this, two new markers have been discovered (although they aren't available outside research contexts currently) so who knows. At this point my clinical picture gets more complicated and less clear every year. Now I'm a bit more resigned to the fact that I'm unlikely to get a nice clear diagnosis and just try and deal with what my body throws my way. There are a few patients around with both MG and Dysautonomia. I've known Stephanie (from Kind of Broken) for a fair few years now. Otherwise off the top of my head the marvellous @mutant_robot Insta has both . But overall it's not that common or at least not that commonly discussed. Many of us have neuromuscular issues on top of autonomic ones, but the why remains elusive for many.

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx