Wednesday, 9 November 2011

"OMG! That is weird". Or is it?

I do delight in freaking out medical practitioners with my weirdness. Lets face it, you do have to find the fun in Bob where ever you can. Luckily, my weird quota seems to go up with the more time that passes.  So I have many opportunities to freak out doctors near and far. Why just yesterday I showed this little video of my foot to my cardiologist and received an "OMG! That is weird".

 

Which is just what you want to hear when you see your specialists.  Not that it's that unusual these days. But a wee bit more pokerface would be appreciated. (It's most likely a muscle fasciculation, by the way.  Could be a spasming blood vessel, but I need to check my pulse next time it happens to work that out. Another moment of excitement to which I can look forward).

At least I managed to get this one of video. They happen frequently on my body these days. But when you try to explain these things you often look like a loon. Now at least it's documented so they know I'm not some weirdo making these things up. Now I just have to get 'stroke face'* (when the left side of my face droops) and 'crazy eyes'* (probably nystagmus, you can see a little bit of it in this vlog I did ages ago) on camera.  Not that I generally think to do it when it happens.  Usually I am sick as a dog when it occurs and really I'm not thinking of Kodak Moments at that stage. My report from uberneuro actually includes both delightful phrases. At least I know he was listening, I guess. And it doesn't look weird. No. Not weird. At. All.

(* For those new to the blog, this is what my delightful children call these things.  Basically if mum has stroke face or crazy eyes they know it's a bad day).

What I do love is that even as I write I know there'll be another Bobette out there saying "Hey, I have that too". Because for all our reported 'uniqueness', we have a lot in common. Apart from the odd specialist, most doctors are unlikely to see more than a handful of Bobettes in their practice. And even then without specialist knowledge, they may have difficulty differentiating the weird from the not so weird. Thanks to the internet, Bobettes from all around the world can connect and share their stories. And all of sudden you realise your weird is actually approaching normal. Well not regular people normal. But our normal bar is quite low and easily excited by discovering the normality of our abnormal lives. We are a simple folk.

Another great example of my not so weirdness, is the fact I nolonger 'prune' when I have a bath or swim. Here I was thinking it was just me and my bizarre body. But no there are many many Bobettes out there with the same issue, all thanks to SNAFU. Who knew that having your nerves die would mean a lack of pruning? Not me, that's for sure. I don't recall learning that in my Neuroanatomy and Neuropathology classes. And when put up on a forum, a large group of non-pruners came out of the closet.

Or my labile blood pressure that apparently is quite severe. To give you an idea here are 3 readings from a five minute period.

 Time 1
 Time 2
Time 3

Fun times. Not exhausting at all. And, as I now know, not that uncommon in the world of Bob.

And these are just the tip of the iceberg as far as weirdness goes. Hell, even my battle scars from my hospital stay were greeted with a chorus of "Me too!"

(Good old Nurse Ratched, wouldn't believe that I react to tapes)

And that, for me, is the joy of social media. It stops us from feeling so alone. If only one person responds with a "Me too", it's a relief to know you are not alone. To know that whilst you are abnormal to most of the world, there is a part of the world out there that understands and gets it.  That small connection removes a layer of fear and makes you feel a little less lonely. We may all differ in severity and aetiology, but the world of Bob is quite inclusive. After all, a busted ANS is a busted ANS regardless of your cause.

And then you realise, in the world of chronic illness it is actually quite possible to be abnormally normal.

Cheers
The always weird Michelle

24 comments:

  1. ohhh prune as in get wrinkles. I was thinking 'prune' as in trim (as in bikini line hair removal- must have been the mention of swimming that made my mind wander to that) I first thought that actually sounds ok- not having to 'prune' before going swimming. I'm a little slow today!

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  2. Elizabeth - Bwhahahahahahaha. I may have to go back and edit that! :)

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  3. There's a muscle in my face that twitches like that. At least I think it's a muscle. I haven't even mentioned it to the doctors yet. The visits are so short I never seem to get to everything.

    Oo, learned a new word today. "Fasciculation." Cool beans!

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  4. I kept waiting for the Alien to pop out of your foot! I now react that way to tape and my compression stockings :(

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  5. Amy - new words are always good :) I get this on my face as well, but mostly it's stomach down. sometimes it seems deeper and I can't see it as clearly. This is the first time I had the forethought to grab out my phone and tape it.

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  6. Michele - That's what I thought too. It looks like just before the alien bursts out of John Hurt's body. The tape issue is really annoying. I'm still searching for one I don't react to. Whatever is on those stocking tapes is bad. I end up welted on my legs from it. The joys we live with.

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    1. Mast cell activation most likely. I'm a male with bob. Bigger kidneys equal more fun.

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  7. I hope you'll enjoy hearing a big "ME TOO!" from me on this post.

    As soon as I watched the beginning of your foot video I was put into complete familiarity - my muscles all over my body randomly twitch in exactly that same way! The only one I've got on camera is my finger, which randomly starts moving around like it has a mind of its own.

    Also, is nystagma when your eyes involuntarily move around? I was lucky enough to have my case caught in an EEG. My eyes love to start randomly twitching around in my head when I'm trying to focus on something.

    And again, ALSO, my readings used to look exactly the same as this. I don't take them often anymore because it freaked me out and no doctors believed me when I showed them, so I don't know if it still does now that I'm highly medicated.

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  8. Now that you mention it, I can't even remember the last time my fingertips or toes pruned...must have been years ago. And that bizarro muscle-twitch thing has happened to me before...try soaking your feet in epsom salts. The magnesium helps with muscle twitching. I am glad you caught it on video though! My twitching episodes usually don't last that long but the most annoying one is my eyelid which a friend actually pointed out to me before.

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  9. I didn't think there was anything weird about that muscle twitching in your foot! I get that all the time all over my body... I have yet to figure out what is causing it - but it's one of those things that I just haven't bothered to bring up with a doc - they already think I'm nuts and uncooperative. :) Maybe taking a video sometime would be fun though... just for the "freak out" affect. I get "stroke face" too by the way... that actually happens very frequently - whenever I get tired... sometimes I wake up that way - sometimes it doesn't happen until afternoon or evening... it's almost always on my right side, every once in awhile it's on both sides... very rarely I'll wake up with my left side "falling off" - but it usually doesn't last very long -- weird huh? Oh, and tapes are a BIG problem for me too... thankfully I can handle "silk tape" to a certain extent... and my IV infusion nurse is really good about being careful with me. :) LOL! Here I am typing this and I'm getting another "weirdo"symptom in my left forearm - the muscle is trembling and twitching my entire left arm, which is wrecking havoc with my typing... Guess this comment has been too long!! :)

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    1. YOUR NOT CRAZY. HYPER POTS IS HE'LL WALKING. THE DOCS JUST DOUBHT WHAT THEY CAN'T UNDERSTAND.

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  10. CM - I don't take mine that often anymore either. I can feel the jumps anyway, they are so sudden and extreme and really there are better ways to spend the day than measuring my bp everyday. Meh is my approach these days.

    Defy Gravity - I already take magnesium supplements but it seems to do little to help these. This one actually went on for about 4hrs. I do get quicker ones, but most last for a few hours at least. The eyelid ones are annoying, I find they are worse if I've had too much caffeine.

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    1. IT IS HYPER REFLEXS. BENZOS TO THE RESCUE. PROLY KLONOPIN.

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  11. Nonna - It seems many have an ipsilateral problem. For me I'm primarily a left sided mess. I love there so many of us with these 'unique' symptoms. Maybe I should show my cardio the responses on here to see how many of us have these symptoms. Obviously we're completely normal ;)

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  12. I just found your blog. I have the muscle twitching all over my body. The most annoying is when it's in my face. I also have the droopy face. Especially in my right eye. Labile bp and pp also. Your readings look very similar to mine. Do you have hyperadrenergic POTs?

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  13. Re: reactions to tape--my son is allergic to latex; perhaps you are as well. He gets nasty angry red marks wherever he's had bandages/plasters or tape containing latex.

    Sometimes socks and etc. have latex rubber elastic in them--have to watch out for that as well.

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  14. The Altiner's - Welcome. No not HyperPOTS. They think I have Dysautonomia secondary to an underlying progressive neuropathy. Well at least this week they do, its changed so many times.

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    1. IF YOUR BP RISES YOUR HYPER DEAR. BUT YOU DO PROLY HAVE COMORBIDITIES. WHEN YOU DO NOT HAVE A NORMAL BODY FRIENDS SHOW UP. DISEASES. SWEET RIGHT. I LITERLY FEEL YOUR PAIN.

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  15. Amy - I'm okay with latex, but there is definitely something in the adhesive they use which sets me off. I'm still trying to find a tape or even a bandaid I can use without getting the welts.

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  16. ME TOO! Not exactly, I have Complex Regional Pain Syndrome, which is just another kind of nervous system malfunction. I have had many a twitch such as that in the effected areas. I have also had many doctor/whatever specialist visits that left them stumped and looking at me like a freak! These days, I am actually surprised if something that is wrong with me has a standard explanation. It's nice being a freak, at least weird things don't freak me out anymore! Great post :)

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  17. I wish you success on your quest to identify the offending substance!

    I remember my husband was very upset when I identified our son's latex allergy. He saw it as more bad news. But for me, it was good news, in a sense--no news is bad news as far as I'm concerned; I want to know exactly what we're dealing with.

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  18. Hayley - another twitcher! I've given up on standard explanations these days as you say weird things don't freak me out so much anymore either.

    Amy - yep sometimes finding what the problem is, is a good thing. Strange for others when you say 'YAY I have a [insert allergy/disorder of choice].

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  19. Hi there, found your blog a while back and periodically check back to see if there is any news on the DANZ website progress (went to the site today but nothing much there yet) - thanks so much for being part of the team pulling it together and I look forward to the content when it comes..
    But in taking a browse through your recent blog posts I found this one on fasciculations - a word I also learnt from my cardiologist! But it was great to get a name for the weird things that my muscles do.
    I am an Aussie (from Brisbane) who presently lives in Botswana, Africa where my hubby and I are missionary volunteers and have been since 2001 - doing all kinds of things not least helping young adults learn what it is to live life and do business in an ethical fashion. After not recovering properly and developing some strange symptoms after a virus in Dec 2009 I was eventually referred to a Cardiologist here who within the first one or two visits was referring to my symptoms as 'all part of the dysautonomia' - seems I have POTS - so spend 90% of my days horizontal to keep my heart rate down and maintain a more 'pain free' existence without headaches. Someone from the UK sent me a recliner wheelchair which has been wonderful and allowed me to get out sometimes - like to a coffee shop a couple of times :-) (we are still not sure how we are going to be able to get back to OZ when the time comes in a year or so time when I can't really sit up for more than a couple minutes at a time!!!)
    Dehydration (since we live on the edge of the Kalahari Desert) is always a problem so it is a constant battle to keep up the water and the salt to maintain blood volume and the magnesium (I do have far fewer fasciculations than I used to) - I have as much magnesium as I can tolerate (without giving me diarrhoea). I have fluctuating issues of constipation and the opposite, and recently added fat intolerance to the list so cannot eat anything with fat or oil without having a digestive enzyme tablet otherwise I also become too prolific with use of the Toilet Paper!. and give myself nasty abdominal pain...but I learnt that the ANS also controls the electrical impulses that are needed to appropriately contract the gall bladder so as to release bile.
    I tell you this condition is one sure way to discover stuff about your body that you never knew before and to realise how intricate and complicated the body's systems are.
    It's great to have a wonderful hubby who is well domesticated and a Doc who accepts one's symptoms as real..... and its great too to 'meet' others over the internet who share our brand of 'normal' :-)....finding info on the net for me has been soooooo helpful and has enabled me to not feel so isolated - thanks Michelle for blogging!

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  20. I Stumbled Upon This Blog..It's Amazing! I Too, Get "Stroke Face", Crazy Eyes, And Muscle Twitches. Myoclonus Too. Diagnosed POTS And CFS At Mayo In January

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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