Sunday 19 June 2011

Uberneuro: The good, the bad, and the new party trick.

After much trepidation, nausea, and frequent pee stops, I managed to get to, and survive, my visit to the uberneuro.  I don't mind admitting I was a wee bit worried in the hours, okay days, preceding my appointment.  Would he think I was a nutter?  Would he think there was nothing wrong?  Would he find something terribly, terribly wrong?  Would he be the wearer of a colourful bow tie (the international symbol for "I'm a God complex arsehole.  All shall bow to my awesomeness")?  These are the things that go through your mind before the big appointments.

It's ridiculous that after all this time I still worry that I might end up with the nutter tag.  I know I have a genuine medical condition.  I've had it verified by a number of specialists.  I have the hard data in the reports.  Yet still that little voice in the back of my mind says, "it's all in your head, loser".  Logic and fact be damned. It's the same little voice that took up residence after my horrendous and soul destruction visit to my local condescending and incompetent General Physician when I first became sick.  Every time I think I have finally succeeded in getting rid of that voice, it raises its ugly little head once more.  The King Cockroach of the little voices in my mind.

That's one of the joys of having an invisible and unknown illness.  What others can't see they doubt.  Then if you're especially lucky, they are kind enough to share their doubt with you.  One doubt filled comment.  One judgmental look, and all your confidence crumbles.  Maybe they are right?  Maybe it is just all in my head?  I'm not quite sure what I'm supposed to look like to prove I'm ill, but I still feel like I should somehow attempt to look the part.  I like to pride myself on having a pretty good attitude about this whole illness business, but times like this it all comes flooding back and all those insecurities take over.

Two and half hours after I walked into the office in the dingy old section of the hospital, I finally had answers.  All the months of waiting actually paid off.  That doesn't happen very often.  So many times I have waited and waited only to have my piss poor health confirmed, be told I was unique, that they have no idea why, and that there were no treatments to offer me.  Time well spent, not.  Always followed by a bill that required the offering of my first born, or left kidney to pay.

It was the longest and most thorough neurological appointment I have ever had.  I was poked and prodded, and even bared my naked bum to his face (thankfully no inappropriate flatulence, though for some reason I felt a sudden desperate need to vacate my gasses as soon as I dropped my undies).

I was taken aback by the fact he actually asked my opinion and made jokes.  Who was this man with the bedside manner?  Surely he cannot be a member of the neurological profession?  The words 'professor' and 'neurology' are never found in the same sentence as 'personality' and 'humour'.  Well, unless the words 'lack of' are involved.  He was a rare breed indeed.

Mr Grumpy found great humour in my body's incompetence, chuckling away to himself through out.  Is it one point or two? Is it hot or is it cold?  Can you feel this pin I am sticking in your stomach?  The physical equivalent of a Mensa test.  Unfortunately, Mensa will not be calling anytime soon.  I fear my body is not even fit to carry their pocket protectors.  In fact, I'm pretty sure that the nerds would give me a swirly, and laugh derisively at my inability to identify prime numbers.  I did find out that my right-side is far more intelligent than my left, which may have an exciting career ahead as a speed hump.

So what does it all mean?  My neuropathy is spreading, and spreading faster than I thought.  I think back to early 2006 and I was relatively well.  Then my ANS went into melt down.  A few years ago the toes on my right foot started burning.  Then it was temperature sensation, pin prick, reflexes, burning my hands, the list goes on and on.  (I've written about my various progressing ANS symptoms so I wont bore you with those here).  Now I am uncoordinated and weak as a new born kitten.  Fun times.  Most surprisingly I now have a large patch of my stomach you can stick a pin in, and I simply don't feel it.

He confirmed that my version of Bob is not related to a virus as first thought, but rather an underlying genetic neuropathy.  This isn't really surprising.  I've never brought into the virus argument, it just never fit with what I was experiencing and always felt like a red herring.  He agreed and said my presentation and progression were not reflective of a viral aetiology.  It was nice to finally get an answer to 'why'.  There's something reassuring about an answer, even if that answer is progressively dying nerves and all that means for the future.  It was equally nice to have things like MSA and a variety of Parkinsonian disorders ruled out.

In the world of possible answers, it's not really the best answer I could have received, that would have been Bob is due to A, if you take B you will be cured.  But it's also not the worst.  It's an answer and frankly, that's a relief.  Uncertainty is a far worse diagnosis.  Uncertainty is a shadow being, menacing, and waiting to pounce.  It leaves you floundering, not knowing where to go or what to expect.  A diagnosis, any diagnosis gives you legitimacy.  Legitimacy in the eyes of others, and more importantly, for yourself.  It also gives you something tangible to deal with, and that is priceless.

I will admit to a moment of "why couldn't it be a tumour.  They could cut that out", because that's how your mind works when the news you get isn't all beer and skittles.  A tumour becomes a viable and more preferable option in comparison to diagnoses that involve the words 'progressive' and 'nerve death'.  Sounds crazy when you say it aloud and I know that many would be shocked, but crazy is order of the day over logic in these situations.

I still have more tests ahead to clarify if I am dealing with crap or super crap, not that it will change my treatment options greatly.  It's all still symptom management rather than treatment.  The dead nerves will continue to be dead nerves and more will join the party.  And really, the last thing I need is some form of reanimated zombie nerve roaming around my body.  I've watched enough bad scifi to know that kind of thing never works out well.

At any rate there is no one to do the biopsies I need done until next year, so my plan is just to sit back and not worry about the possibilities until they crop up.  I figure, it is what it is, and I can't do anything about it so I'm not going to waste my time worrying about 'what ifs?'.

Besides, I now have a new party trick, the human pin cushion.  Maybe I could try out for The Dudesons as the new human dart board, or join one of those freak shows lying on a bed of needles.  Oh the possibilities.
(Though I'm not sure the outfit goes with my new found sense of style)

Michelle :)

Time to sing my favourite song and break out that old bottle of butterscotch schnapps.


  1. I'm glad you didn't get the doc with the flashy bowtie. Awesome that you actually have someone who can gove you answers. So sorry that there isn't an easy fix for this. It's kind of funny how we know deep down whether doctors are getting it or not. I have the same issue with one semi-normal side of my body and one side that's a freak show and I know there has to be a reason for it, just waiting for the right doctor.

  2. Are you in my head woman? Love your blog! Love you. Hope you have a relatively good Sunday. Just remember, "Always Look on the Bright Side of Life." I am right next to you singing the chorus. lol

  3. I'm glad that your appointment went as well as it could go. Even though they can't fix us, it's always good to go to the BIG specialist and at least have them confirm that yes, we are very unusual and quite ill and at least get a bit of an explanation of some of the mechanism of the disorder. I had a similar bit of relief after my visit with Dr. Francomano (one of the top EDS experts in the US) last fall. A bit of "crap this can't be fixed and will get worse" and "why can't it be something easy to fix?" but ultimately, there were many other possibilities that I could have had that I'm just a grateful to NOT have. And I am also very glad to have a 7 page letter from Dr. F from my visit from her to shove in other buttfaced doctors when they try to get fresh with me... :)

    In any case, I say we should try to uncover even more freakishness... perhaps we could have a Spoonie Circus?

  4. Michele - answers are nice I just wish they could have been of the nicer variety. I'm trying not to think of the nasties that I need further testing for. I don't like when they say I have to seriously consider something that actually scares me. I think I may live as an ostrich for the foreseeable future.

  5. Terri - why yes I am in your head :P Maybe we can do a duet? I love that song. ;)

  6. Ericka - it's a strange process we go through isn't it. I think so many of us have been told it's all in our head that it's nice to have those pieces of paper. Chronic illness takes your mind and emotions to some strange places, all you can hope is that you make it out the otherside even f your body is still broken. I'm glad you have a good professional on your side too. It makes a huge difference even when they can't fix you.

    I like your idea of a spoonie circus. We could really freak some people out and have a ball to boot.

  7. Wow- an answer is an answer in the land of mystery ailments and your neurologist sounds like mine from the time I had a straying leg! How about getting a tatt every couple of years just INSIDE the de-nervated area [like a wavy line], in a different colour each time? Then you will get awesome, weird-shaped tattoos to show the doubters where the dodgy bits are & you won't get hurt during!! ( I had one leg that was making me turn left when I wanted to go forward! I would wake in the night panicking that I had lost it entirely! Turned out to be a partial transverse myelitis in my lower spine from a shocking headache/fever I'd had about 6 weeks previously. Gone after about 4 more months, no residual. Lucky me!)

  8. I was nodding my head in agreement in so many parts of this post. Why are so many medical professionals arsehats? I am pleased you got a good one :)x

  9. Murfomurf - it's a fun ride isn't it? I do quite like the idea of the tattoo, though I think it may end up looking rather psychedelic by the end. Given that I rather like Jefferson Airplane that would probably work!

  10. Kim - I think there must be a class on becoming an arsehat somewhere in the curriculum. Thankfully a few seem to fail that class. Having worked in neurology I can definitely say he is much better than a lot of his colleagues on the personality front. If you have something particularly;y weird or rare he is the man to see.

  11. I too am in the neuropathy club. And don't ya' just love biopsies. I've had a skin biopsy, TWO lip biopsies (that basically said the cells in my lips have atrophied) and TWO bone marrow biopsies and a spinal tap gone wrong. And somehow, I manage to still exist, thanks to my weekly group meditation with my psychologist and chronic illness group mates.

    Thank you for sharing this story. I especially appreciate the part about how we second guess ourselves, even despite the fact that we have test results to show that our dysautonomia is real. And yes, all it takes is ONE ignorant doctor's doubt to plant the seed for a lifetime of doubtful moments.

  12. I'm glad that you've got some answers finally. From this post it almost seems like a good bedside manner isn't the best thing to be after--humanity seems a lot more appealing.

  13. MissNikkiAnn - sorry to hear you're in the club, though glad to hear you have some great support. I just started back at yoga and meditation with my physio. It's been great, though trying to 'feel' my toes in the meditation phase always makes me giggle.

    The second guessing ourselves always gets me when I least expect it. I wish the doctors would understand how much their attitude can impact on how patients cope.

  14. M. Hicks - thanks. I'm rather happy to have an answer after 5yrs of slogging through the medical quagmire. Humanity and compassion certainly do go a long way when dealing with complex and scary issues.

  15. I wish there was a "like" button for the comments on blogs! :) I found myself nodding my head as I read them. Why is it that doctors - particularly neurologists it seems - can be such snots? The reason I avoided seeing doctors for years (as my symptoms continued to worsen) was because of a neurologist who kept telling me there was nothing wrong with me. Years later I've finally seen a specialist who knows what's going on... but part of me can't help but wonder if I'd be quite so bad off now if I'd had symptom treatment all this time. Of course, it's just as likely that my health would continue to go "down" since symptom treatment isn't a cure or anything -- BUT I can guarantee my emotional/mental health would be better if I could quit second guessing myself and just believe what my body is telling me.

  16. I hope that doctor didn't laugh AT YOUR BOOTY??? :)

    Hope you get some good news soon, dude. Otherwise, I would like you to know that I am available to pop over and kick some asses. OKAY?

  17. Nonna - I love the comments too, I have the most wonderful, gorgeous and intelligent readers :) So many of us have bad doctor experiences. Medical knowledge is crucial but bedside manner and compassion are equally as important. The world has changed, medical care should be collaborative and patient centered. If you have no rapport with your patient how can you expect to have a successful outcome? I am happy for the doc to direct and facilitate my care, but please don't treat me like a moron.

  18. Veg - luckily he didn't laugh, though he would have had a face full of my pungent gases if he had. If it all turns to shit I just may call on you to be my heavy and kneecap some people. I'll pay you in red velvet cake.

    Hope all's well in the grown up world of blouses and office cubicles.

  19. I can totally relate to the "it's all in my head" feeling, despite the undeniable medical evidence. Rude doctors' attitudes tend to get in your head that way. You perfectly articulated how I feel in those insecure moments, so thanks!


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