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!

Date Night and MRI.

Last Thursday I had my MRI done.  It nearly didn't happen twice. A radiology tech came out to talk to me and heavily tried to talk me out of having the MRI done since I'm pregnant. I understand the reserve, it's not like I'm itching to get it done, but both of my OB's and my PCM assured me it was safe.  Without this MRI we have no idea how bad my elbow is.  I had to sign a few consent papers and then we went down to the MRI truck.  To do an MRI on your elbow you have to lay on your stomach, which wasn't going to be fun - but I'd manage.  However, my arm doesn't straighten and it took quite a while trying to figure out how to fit it into the machined.  At one point they were talking about canceling, but when I asked what my other options for finding out the damage - and learning there were none - we managed to maneuver me into a position that would allow my arm to fit.  It required me sort of laying on my stomach with my arm over my head, and my shoulder slightly dislocated but we managed to get it done. My face was so close to the side of the machine I could have licked it, so I just closed my eyes and tried to pretend I was somewhere else.  I should be getting the results soon.  I'm hoping its correctable by surgery.  If surgery is a possibility I'm going to have them MRI my wrists and see if that needs surgery at the same time.

On Saturday Chris and I had a rare date night out by ourselves.  The last time we were able to go out without any kids was to see, "The Dark Knight" before David was born - so it's been about 18 months.  Kenny offered to watch the kids so Chris and I went to see "The Imaganirum of Doctor Parnassus". I really enjoyed it but it's not a movie I think too many will enjoy. Gilliam is definitely in his own world and you really need to appreciate that kind of personality to enjoy the movie.  Afterwards we went to Genji Japanese Steak House which was absolutely delicious.  It was so nice getting out with just Chris. We plan on doing it one more time before Charlie gets here (Bon Jovi concert!).  Once Charlie comes I won't be able to go out until he's at least a year old.