Tuesday, June 21, 2011

Letter from EDS Doctor

So following getting the bloodwork results from my doctor I got thinking.  I was thinking that I always thought that C-Reactive Protein was a test about inflamation.  So I get on google and search for it and find out that yes, it tests for inflamation.  I then get thinking because I was sure that EDS was a non-inflamatory condition.  So I start searching for C-Reactive Protein (CRP for the purpose of this post!) and EDS and can only come up with people that have the vascular type having elevated CRP.  I also start realizing that CRP can also be a test for autoimmune conditions.  My rheumy suspects I have some type of autoimmune disorder but doesnt know which one, if any.  My rheumatoid factor and ANA have always come back negative (except for this latest batch which I just noticed when typing up the post about my dr's appointment :S) so it has never been pushed farther.  With no idea what could be causing the elevation and wondering if EDS actually would cause elevation, I got on facebook and sent a breif letter to an EDS doctor that is on there and who provides answers and help to those who ask it.  So basically I asked if EDS would cause the elevated CRP or if we should be looking into auto-immune.  Imagine my shock when only a few days later I get a reply!!

His advice is that it is not usually elevated in EDS but there are many reasons for it.  He suggests waiting a month and then redoing the tests to see what those values are and if it is still elevated for me to follow-up with my rheumatologist.

So the plan is that I will call my GP's office (have to make a call there anyways) and ask for that bloodwork (and the ANA now that I noticed it is positive!) to be done again to see what those values are and then go in and talk with my GP about them as my Rheumy is still not back and most peolpe are saying that he probably won't be coming back :(

* Looking at the bloodwork sheet, my GP highlighted two numbers and the CRP test name so I figured that the number and the 'positive' both went with the CRP until I took a better look at it tonight to write up the entry I did about my dr's visit outcome.  

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