Saturday, August 14, 2010

No to Steroids, Yes to Neurologist

So I'm off the steroids and I saw my first Neurologist.

The Steroids

No more steroids means no more mood swings, which is good, but damn do I feel run down.  I feel like a slug.  I don't want to move anywhere, I'm just too tired.  I've been keeping busy with the help of my good friend Vietnamese iced coffee.  I know this is a temporary fix, but I'm assuming the no-more-steroids-so-I'm-all-dragged-out-and-sleepy thing is also temporary.

More importantly, hands are going back to being a mess.  They woke me up a few times last night with their OW!OW!OW! throbbing thing in the joints of my fingers.  It's like they want me to wake up, clutch at them, and check the clock, because by the end of that, the throbbing has stopped.  And then they wait until I've fallen back asleep to repeat the cycle.  That's their fun game.  I guess they get bored when I sleep.

My fingers don't bend in the morning anymore.  I can't make fists until late at night and then it's not a complete fist.  I'd say I'm about how I was in March/April, but the slope seems to be pretty steep in that I'm worse today than yesterday.

The Neurologist

He was really nice.  I was nervous and a little intimidated because any doctor who chooses to deal with a person's very complicated brainmeats is clearly A. Way super smarter than I will ever be and knows it, or B. Off his rocker. 

This guy, Dr V, was really great.  He looks like a total nerd.  It's intense.  White button down shirt.  Dark dress pants.  Silver colored crew cut.  Thick glasses.  Bow tie.  A yellow bow tie with a swirly pattern on it.  Seriously, a dude who has the balls to wear a bow tie?  I was excited to meet him.

We went over all my crap/history.   He did his exam.  He did rule out Reflex Sympathetic Dystrophy.  He says he's treated that and I don't fit the pattern for RSD at all.  So that's something.  Then he kept looking at me with squinty eyes and then he'd say, "Okay, hold on a minute," and he'd leave and come back with a giant neurology text book and he'd flip through it and read and sigh and say, "Okay, hold on just a second," and he'd leave and come back with an even bigger text book.  I sort of baffled him.

He was trying to come up with a neurological disorder that fit all of my symptoms.  The best two conditions he could come up with if he were to try to encompass all my symptoms were chlamydia which doesn't really fit at all plus unless I need to smack my wife around a bit, I don't have it--or lead intoxication but I don't fit that mold either.

So this is what he came up with.  He did diagnose me with bilateral ulnar neuropathy.  (These big words basically mean nerve damage of the ulnar nerve--the one by your funny bone that runs down the side of your arm to your pinky and ring finger--and both arms are affected.)

However, he believes that my neurological symptoms are not part of/due to a neurological disease.  Dr V believes that my neurological symptoms are a result of the core problem.  As in, the core problem (which is still a mystery, huzzah) caused swelling which then compressed the nerves in my hands and wrists, damaging the nerves and causing the neuropathy.

So bottom line:  I have neuropathy caused by the core problem which is not a neurological disease.

There's just one thing.  What the deuce is the core problem!?!  

In his opinion, I have an autoimmune disease.  That's not a guess to him.  He said pretty confidently, "You have a connective tissue disease.  That's clear."  I clarified that this was besides the Ehlers Danlos and he reiterated that he thinks the core problem is autoimmune.

So now I'm going on Monday for an EMG, which several doctors have told me is "very uncomfortable."  This is to confirm the neuropathy and make sure I don't have an underlying nerve disorder.  They get to put electrodes on my arms, hands, and fingers and zap me a bit.  Then they get to insert needles into my muscles.  It's going to be a party.  I might ask if I can bring a heavily rum laden umbrella drink.

So, we're back to it being an autoimmune disease.  And if I recall correctly, that is what the FIRST doctor I saw said.

Just for laughs:

Primary care: Arthritis? See a Rheumy!
Rheumy 1:  Autoimmune!  Scleroderma!  See a Dermatologist!
Dermatologist 1: I dunno.  See A Rheumy/Derma!
Rheumy/Derma:  RSD!  See this Rheumy!
Rheumy 2:  Hmm.  Either autoimmune or RSD.  See a physiatrist!
Physaitrist:  I'm a dick.
Rheumy 2:  Uh... See a Neuro!
Neuro 1:  Definitely autoimmune.

Me:  *slow blink*  I'm tired.


  1. Fellow EDSer. Found your blog via google alerts. We're so fun. :)

  2. Wow, you sure are getting the run around. I know what that feels like, too. Good luck.