Thursday, February 18, 2010

The doctor merry-go-round

Pain level: 5
Dislocations so far today: none (yeah, baby!)
Subluxations so far today: Right shoulder, right ankle.
Meds: taking 1 meloxicam, so we'll see how that goes.
Major complaint:  more stiffness, weakness, throbbing pain and swelling in the joints of my hand (R>L)

More doctors today.  Saw the Dr. R, the Dermatologist.  His visit sort of surprised me.  He wanted me in a gown.  (Um I'm here for my hands?  Also, do you have any idea how hard it was to get dressed independently already?  Now you want me to undress, wear paper, then dress myself again?  With ONE semi-working hand? fine.)  

He looked at my chart and immediately wanted to know all about my EDS.  (um, also not why I'm here.)  I gave him the run down and he had never heard of Hypermobility type EDS, which means that his information is older than 1997 when they restructured the classifications.  I filled him in as much as I could, trying to steer him back to the problem at hand.  No, I don't have the super stretchy skin type EDS.  I don't have Classical.  "Type I" that is.  I have "Type III".  Yes, I can touch my nose with my tongue.  See?  What I can't do, is make a fist with my right hand.  Little help?

He looked really really closely at my fingers with a blue-ish light and what looked like welder's goggles and said that I have dilation of the capillaries (? some vein type thing that wasn't "veins") of my fingertips which does line up with a Dx of Scleroderma.   But that isn't enough to make any sort of real diagnosis.   He was un-intrigued by my calluses-that-aren't-calluses.  His opinion is that they are either scleroderma, or they are calluses.  Calluses that happen to hurt, and that I have no idea where they came from?  Yup.  He said that I must be doing something differently lately to form a callus there.  well, okay.  Like writing differently.  Um, I'm not?

No tests ordered.  Basically he told me I need to go see my Rheumotologist.  Funny.  He sent me here, remember?   Dr R's advice was 1.  Keep my hands warm for my Raynaud's (knew that).  2.  Keep my hands moisturized so that the skin doesn't split from the tightness (can do). and 3.  Here is this name of a doctor who is a Dermatologist AND a Rheumatologist--perhaps she's the next step (damn, that's a lot of schooling.)

So, I called Dr. E's office and he called me back and I filled him in on the above.  He was disappointed by the lack of testing and answers as well.   And his reaction to Dr. R saying it was just a callus I didn't remember getting was, "Well, it's not like you've started digging ditches in the past two weeks!"  I knew I liked him for a reason.  He told me to go ahead and make an appointment with this Rheumy/Derma Dr x2 woman.  Which I did--earliest they can get me in is the end of April, but they'll call me if there is a cancellation.  

Raynaud's has been going crazy today.  I think it's a new record of something like 6-7 episodes.  Bleck.  And by 4PM I have "normal" (as in for other people but not for me with my EDS) movement in my right hand.   Before then, it feels like I'm wearing a glove that is 5 sizes too small and any movement will rip it apart. 

But now, we play the waiting game.

Time: 11:31 PM
Can touch forearm?  Just barely
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 120º
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 50º
Angle of extension of the last joint of finger: 110º

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