Sunday, April 25, 2010

Scleroderma - Initial diagnosis

I returned for the follow up visit with my doctor so we could discuss the blood tests.

I don't remember all of the blood tests and markers and such that we discussed.  I know I should, but that was in 2002, and now those specific names just aren't important anymore.  To some Sclero patients they are.  Not for me.  

I DO know that there isn't one specific test for Sclero.  I also know that I have a positive ANA and Scl-70.  Combined with my auto immune thyroid history, the recent development of Raynaud's, and my skin changes, the doctor was on the ball and said, "I think you have Scleroderma."  He admitted he had little to no experience with the disease, but referred me to a Rheumatologist that he thought would be able to help.

Ok.  Scleroderma?  What the heck is that?  I went home and did some light research on the web and didn't really find much.  I found out that it meant "hard skin," and yet seemed that it killed people.  I was confused!   The name of the disease really is a misnomer.   "Hard skin"?  Yet it could cause all of these other internal issues and kill people?  I was only having skin issues, I wasn't going to have these other problems, right?  What?  Huh?  How?  AGH!  Most of the stuff I WAS finding didn't give a good prognosis.  It was only 8 years ago, but at the time, there wasn't a ton of good information available and let me tell you, everything that WAS out there was horrible!  

I waited and got my appointment with Rheumatologist.  He was a very sweet man.  He ran the same blood tests, again, just to be sure and did a complete physical.  I spent a good 2 hours with him on my first visit.  Though I tried to be calm and relaxed, he knew this was not the case.  He sat and talked with me and explained everything in detail.  He really tried to put my fears aside.  Though, he admitted that at the time, it was documented that roughly only 300,000 people in the U.S. had this disease and that they really didn't know a lot about it.  That's not comforting, but he really was trying and had GREAT bedside manner.

He then went on to tell me that he was referring me to someone else.  A Rheumy at Johns Hopkins who specialized in Scleroderma and, in his opinion, one of the best in the world.

Relief!  I was going to see some who knew what they were doing!

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