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)

Cheers
Michelle :)

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