Tuesday, May 25, 2010

We like the new doctor, just not his theory.

We saw Dr. K in Boston yesterday.  He was really great.  His office was running behind (by like an hour) but the nurses were really accommodating and kept promising that he was worth the wait.  When he finally showed up, I think they were right.  He stayed with us for over an hour.  He wanted to hear my story first, then gave me a full exam, then we talked for a long time about what he thought.

Here's what he thinks.
  • He can understand why Dr. G would think that I have Reflex Sympathetic Dystrophy, but he is not convinced that RSD would explain all of my symptoms.
  • Instead he brought Scleroderma back into the picture.  He is not convinced that he can rule out Scleroderma based on my symptoms. 
  • Gosh, I wish he would rule it out.
  • So we're down to RSD or Diffuse Scleroderma (possibly Sine Scleroderma?), OR BOTH.
  • He ordered a battery of tests which he apologized for and stated that he doesn't often/like to do this.  Dude, order whatever tests you want--just find out what's wrong with me!
  • After explaining that I have nothing that gives me any relief for my hands (unless I want to be passed out the pain pills I have for bad EDS pain) he prescribed me Gabapentin.  It's supposed to help with nerve pain.  I'm taking it for the first time tonight, and we'll see how I manage.  
  • He was going to give me some med for high blood pressure to help with my Raynaud's but since I'm having less trouble right now (what with the 90ºF weather and all) and the fact that my bp is already low enough that I get dizzy and my vision goes white when I stand up, he decided not to.
  • He wants me to be moving and stretching my hands as much as possible no matter if it's Sclero or RSD.  I'm not to push so far that I split my skin again, so pretty much keep doing what I'm doing.
As far as testing, he is redoing all the bloodwork (again).  This will be my 3rd ANA/RA factor/sed rate run around in 6 months.  There are other things on there that I'm pretty sure I haven't been tested for yet as well.  Or at least there better be.  They took 9 vials out of me around 2pm after having eaten half a bagel plain at 8am and nothing else. And I didn't even pass out.  I am blessed with good veins.

Funny story:  When the phlebotomist went to draw my blood he told me to, "Make a nice tight fist."
I just started laughing and told him, "I can't!  That's why I'm here!"  Well, I thought it was funny.

They're doing a urinalysis--and I must say I am a fucking champ for being able to pee in a cup with two bad hands.  I didn't think I was going to be able to do it.  They asked for the sample and of course I agreed.  It wasn't until I got into the bathroom and was struggling to get my hands to work well enough to get my pants down that I realized I was up Pee Creek without fingers.  I did it though, and I think I deserve a medal.

I also got hand xrays and a chest xray.

I have to go back (when they call me with the schedule) to get a pulmonary function test, a barium swallow, and a bone scan.  Dr. K also mentioned the possibility of a skin biopsy depending on how the other tests come back.

Then I get to go back after all this is done to have another chat with Dr. K to hopefully receive good news and the promise of a cure by eating frosted oatmeal cookies.

 So I am back to waiting.  Again. 

Oh, and when he waggled my joints, as all the docs do, Dr. K said that he had never seen anyone who had hip joints that moved like mine.  Oops!

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