Saturday, July 10, 2010

Results are in--and survey says...

They still don't know.  Saw Dr. K in Boston and the end result is that we are still dealing with "A big question mark."


The details.

We went back over my test results.

  • Bloodwork--all normal except for an elevated ANA.  only 1:320, still homogeneous.
  •  Xrays (Hands and chest)--normal.
  •  Barium swallow--my esophagus is working properly (yay!) though it looks like I have a hiatal hernia.
  • PFT--I have an abnormal amount of air left in my lungs after I exhale, but he said that something like that doesn't normally show up alone but in a group of a bunch of other abnormalities.--Bottom line, doc says that a spinal fusion like mine could result in abnormal lung volume.  (I don't get that, but whatever.)
    • Bone scan-- There was mild symmetric radiotracer uptake in my wrists and diffuse increased radiotracer uptake in my hands and fingers.  Dr. K described my hands/fingers as showing up patchy.  --Radiology said this would be consistent with early Reflex Sympathetic Dystrophy.

      I don't understand what the results of the bone scan really mean.   I know the first part means my wrists are slightly inflamed.  Got that. But the second part?  He mentioned something about the bone metabolizing faster than normal.   Why?  What does that mean for my bones?  What are they doing?  Are they growing?  Longer?  Wider?  Doesn't anybody else feel like this is a problem worth more than passing mention?

      Anyway.  The bone scan seems to be pushing us back towards the RSD and slightly away from Scleroderma.  But not definitively.  Dr. K said I could have RSD or very early stage Scleroderma or Undifferentiated Connective Tissue Disease.  OR I could have RSD and Scleroderma.  OR I could have RSD and Undifferentiated Connective Tissue Disease.  He is not willing to say anything for sure.

      Treatment?  Double my gabapentin and try a short round of steroids.  See a Rehab doctor (not 100% sure for what purpose).  Appointment for local rehab doc (Dr. K the 2nd) on the 26th.  See Dr. K in a month to likely repeat bloodwork for ANA.  He also wants me to see a Neurologist, but he didn't want to bombard me.

      It's the ANA that's giving him trouble.  They keep repeating it.  My first one was 1:1260.  WAY HIGH.  And that's what keeps Dr. K from ruling out autoimmune diseases as an issue since having an ANA of 1:320 isn't abnormal for some people to have just because.  No autoimmune disease, they've just got it for no reason.

      Needless to say, I was crushed by yet another We don't know.  Dr. K said that hopefully the condition will make itself known as it progresses, but let's let it get worse until we can easily see what it is is not my idea of a fun time.  After seeing Dr. K I was exhausted.  Tired.  Ready to just stop seeing doctors for a year or so.  Scooped out.  Like someone had taken a melon-baller and located all the places I store my Strength, Perseverance, and Dark Humor Coping Skills and scooped them out while leaving my Mope Drive, Tear Machine,  and Feeling Fucking Miserable Generator intact.  All I wanted to do was lay in bed and cry like a 13 year old who has just been dumped by her first kiss the week before the dance.

      I was a mess the first few days, but I'm back.  Though, I've come back with the sentiment that maybe I should stop having this "hope" thing when I go so doctors because it just hurts too damn much to be let down time after time.  Maybe I should start expecting to not get answers.  That seems to work for M.

      I saw my Primary Care, Dr. B, right before I saw Dr. K and I said that I was really hoping for some answers.  Dr. B even told me to not get my hopes up.  He said that Rheumatology as a study is not the same field of medicine it was 10 years ago.

      He said, "Ten years ago, they'd diagnosis you.  Today, the pervading new theory is that all Autoimmune diseases are really just one disease that presents differently.  So they don't diagnosis you.   Maybe it's Lupus and Scleroderma and something else all mixed together."

      So the new theory says they can't put their foot down and say what it is--but shit, that really leaves the patient in a bind, doesn't it?  Even if you extract the emotional roller coaster we are put on every time, legally that blows.  For those of us who can't work, try telling Social Security that you are disabled because of... the doctors aren't sure yet.  It could be a bunch of things.  Please help me anyway?

      I'm on the doubled dose of gabapentin.  Not a whole lot of difference.  My hands are a little better some days.  Some days they are swollen and useless.  My spinal stenosis is getting worse and I can't keep my shoulders in place for the life of me.  I start the steroids next week.  I'm hoping to enter into August as buff and pumped up as a Pro-Wrestler.

      1 comment:

      1. Hi Saurou,

        I have the lung thing too, but it is attributed to EDS.

        Check out this article:
        Morgan AW, Pearson SB, Davies S, Gooi HC, Bird HA (2007) Asthma and airways collapse in two heritable disorders of connective tissue. Ann Rheum Dis 66:1369-1373

        I had a bone scan that basically showed lots of osteoarthritis and bone spurs in my really hypermobile-painful joints like my neck and especially my fingers! Not sure if that helps because I don't what your MDs statement means either.

        I went through a phase of having a very high ANA and they ran a bazillion tests on me only to say that they had no clue what was wrong with me. It eventually went down, though I have chronic low-grade inflammation. This was all before my EDS diagnosis.

        I'm not trying to dilute your issues and stress. It's more that I am always surprised at what they discover is related to EDS. Sucks for us that we can have more than one nasty thing inflicted on our poor bodies in one lifetime. Urgh. I hope you have some moments of strength, perseverance, and dark humor in your near future!