Wednesday, March 17, 2010

Test results. Sort of.

Pain level: 6
Dislocations so far today: right index finger once
Subluxations so far today: Right shoulder a couple of times, left patella once, right wrist once.
Meds: meloxicam--2 tablets. 
Major complaint: Pain at my lumbar fusion,  stiffness/pain/swelling in the joints of my hand (R>L)

Well, I had my appointment with the Rheumatologist, Dr. E, today.  No bad news, no good news.  Not a whole lot of news in general.

Blood work came back.  The retest of the ANA came back positive again.  Slightly lower than last time, but Dr. E said there isn't really a correlation of condition severity and titer levels.  The tests checking for specific ANA's that could possibly identify which disease is running around all came back negative.  Which makes me go o.O???

So, we know that these Anti-Nuclear Antibodies are in there.  But when they try to identify them, they don't show up?  Like they're misbehaving and not answering a roll call?  Bueller?  Bueller?  

Anyway--as the doc pointed out, these tests are tricky.  Any one or all of these tests could be a false negative or a false positive.  And it's not like if I had tested positive for a certain ANA that I would immediately be diagnosed with Autoimmune disease X.  OR that because I tested negative that they are ruling out this same Autoimmune disease X.  Makes you wonder why the hell bother doing the tests, right?

So, we went over my new symptoms and how the meloxicam has gotten spotty.  Here are his thoughts.   
  1. Double my meloxicam.  If that works, continue with that.  If it doesn't we start going down the list of drugs like it until I find one that works--until that one stops working and we go back to the list.
  2. He offered to start me on Plaquenil.  A drug originally used to treat malaria, now used in autoimmune diseases.  It takes months to feel any benefit, so we opted to wait until my specialist appointment next month and then go from there.
  3. He feels that it is very unlikely that I have Rheumatoid Arthritis.
  4. He seems to be under the impression now that it is either Scleroderma or Lupus.
  5. That keeping in mind that diagnosing either of those diseases on their own is extremely difficult, the presence of EDS will make it even more of a problem.  Because my EDS affects all my connective tissues, and Lupus and Scleroderma are connective tissues diseases, it's going to throw off all the markers that are needed for the already shaky diagnosis.
  6. He'll see me after my specialist visit. 
Here are my thoughts.

  1. I hate this waiting process.  I feel like all I do is worry until I can see the next doctor, hoping they can give me answers.  Relief.  Mental relief specifically.  And it's always a we don't really know, and we'll see you a month.  Wait some more.  See this specialist.  Then likely wait.  I know I shouldn't expect answers and instantaneous results--it's just I've done the seeing doctors for 12 years before finally getting a diagnosis for an incurable condition.  I don't want to do that again.  And I won't.
  2. It's good at least to know that the treatment for either of these conditions is nearly the same.  Treating symptoms and medications to confuse the immune system.  So if they get it wrong--or never get it at all--at least they won't be giving me the wrong drug.
  3. I know that my body grows a tolerance to medications fast.  They stop working on me quickly.  That's why I under-medicate with my pain meds so much.  If I can ride it out, I will.  Otherwise, they'll stop working and I'll need to get more serious meds.  I don't like the idea of having a disease that needs continuous medication.  It makes me nervous.
  4. I've still got until April for all this to just disappear.  Dr. E said that sometimes immune systems freak out temporarily, something that can last as long as 6 months.  After April, it will be over 6 months.  Dr E doesn't think that's the case.  But maybe it will go away on its own.  That'd be cool, don't ya think?
  5. I'm scared worried tired annoyed going to be okay.  I just think too much, and don't I know it.  As my Dad put it a week ago, someone dealt me a bad hand of cards when it comes to my body, but my mind never stops moving.  I didn't stop to point out that the "someone" was half him (who am I kidding, my mom has two autoimmune diseases and carries the EDS, but you know what I mean).  
  6. I'm having some trouble accepting that this could be with me forever.  Sure we can treat the symptoms, but it could be another problem that never goes away.  And I'm not sure yet how to handle that yet.  I've just come to terms with knowing that my body will never go back to the way it was before EDS/Spinal Stenosis etc.  I'm tired.  It feels like too much sometimes.  Like, can't I just have one of those?  That'd be plenty, right?  But then M gives me a hug and things seem good.  I'm glad I'm here, no matter what problems that comes with.  I just wouldn't mind knowing for sure what those problems are. 

Hand stiffness using middle finger has measure
Time: 10:55 PM
Can touch forearm?  Just just barely.  Ow.
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 120º
Can touch forearm? not very close
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 110º  

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