Thursday, January 28, 2010

Rheum. Appt!

I was extremely nervous all night and this morning preparing for my appt with Dr. Hurley.  Both Chris and I were expecting to be told that he couldn't help us and to go back to my PCM.  I brought the DVD of my MRI as well as a list of all the things the have been shown to be caused by me having Ehlers-Danlos since a lot of doctors try to shy away from that diagnosis since it's "rare".

After a thorough exam of all my joints he said, without a doubt, I had EDS.  What he is concerned about is if it's EDS and also RA.  The problem being there that the treatment for RA is contraindicated for EDS.  He said the RA would be confusing if I did have it as my body is not responding as if it were RA.  Only three joints are currently affected and only one of those has swelling.  The MRI did show a lot of inflammation in my elbow, but that could be a symptom not necessarily a cause.

He ordered another MRI to image my wrists and he's perplexed as to what is going on there.  He said the MRI did show that my tendon in my elbow is stretched out (a symptom of the EDS) that is repaired by surgery.  Also my Synovial Membrane, which is supposed to be paper thin, is now an inch thick.  That's what the two masses in my elbow are.  He talked about certain drugs that may make the swelling decrease, but may exacerbate the EDS.  I asked him about surgery and he said that a surgeon could go in and repair the Synovial Membrane, basically by removing the excess parts.  I have no cartilage left in my elbow though.  It is completely gone and he said once it's gone there is nothing to you can do to bring it back and no way to artificially produce it.  So my two bones will be rubbing up on each other forever basically.  He said there are things they can do during surgery to help the situation but I may never gain full mobility back.  The pain should definitely decrease once they do repairs though, so I'm thrilled with that.

He's referring me to a hand surgeon to discuss surgery (!!!!) and he said that this hand surgeon is the only one he'd send his wife to so that makes me feel comfortable.  My MRI is scheduled for the 8th, and hopefully I'll meet with the surgeon soon after to discuss surgery! Maybe there is a light at the end of the tunnel!


  1. YAY!! I'm happy you're finally getting some help!

  2. Me too Dorothy! For the first time in weeks I feel actually happy and hopeful! There (maybe) an end in sight!

  3. Bethany, I hesitate to suggest this, as I can imagine that loads of unasked for advice is nothing if not annoying. Um, that said- if you have a chance and haven't you might be interested in "Eat to Live" by Dr. Joel Fuhrman. I have read that people with RA have had a great deal of success following his diet lifestyle. Perhaps it is something you might be interested in researching.

  4. I'm totally open to suggestions :) They aren't sure it's RA yet, and if it is I can't treat it conventionally. I've thought about diet change in the past and I just need the dedication to be able to do it. I'll definitely check out the book.