Shaken to My Foundations

Saw a new rheumatologist yesterday.  It was the most time I've spent in one room with a doctor...ever.  She's starting from scratch and refusing to make a diagnosis based on past lab tests.  I like her already.

She's re-running all of the markers for SLE, scleroderma, and polymyositis.  She also referred me to a dermatologist for a vasculitis evaluation and having me get a high-resolution chest CT.  All of this is totally awesome...and scary.  It's almost as strange a feeling to have so many of your past assumptions shaken as to be diagnosed in the first place.  And I feel like I know so very little all of the sudden, as a result I'm putting myself through the curse of the e-medicine age - self diagnosis.  Going from the suggestion of vasculitis being the culprit I began comparing the symptoms of the different forms of vasculitis to the symptoms that I have.  The major problem being that I have so many symptoms that have all evolved over the last seven years.

As a "House, M.D." addict, I've heard him chastise his team of doctors numerous times for suggesting multiple diagnoses for people with diverging sets of symptoms.  Somehow I never thought to apply this to my own symptoms.  I have at least three separate diagnoses and additional symptoms that don't match any of them.  So when this new doctor suggested that from what she was seeing she couldn't diagnose me with any of my prior diagnoses, it took me a little while to wrap my head around it, but it soon made sense.  Why would the diagnoses I'd been given be unable to explain so many of my symptoms?  Wouldn't it make more sense for there to be a single unifying illness causing all of them?  Does it even make any statistical sense for me to have fibromyalgia, SLE, scleroderma, PAH and still have a handful of unexplained symptoms?  It doesn't seem right to me.  Such a small percentage of people get each of these diseases individually, for me to get all four consecutively, within the same short span of years seems like it would take some pretty incredibly bad luck.
So I started searching, finding plenty of diseases that don't cover all of my symptoms, but cover many.  Mixed connective tissue disease seems to be the most likely diagnosis that could come out of this, but it was the indications of vasculitis that the doctor had seem that intrigued me, specifically Wegener's Granulomatosis.  This has been the one disease that I've found for which I fit all of the symptomatic criteria, with the exception of kidney and eye involvement, without discounting all but my GI symptoms, which could just be a result of years of over medication.  It would explain my PAH, joint pain, muscle weakness, incessant fatigue, and even the ongoing bout sinusitis that has lasted for the whole of this last year.  So we'll see.  I don't want to jump to any conclusions without some tests to back them up, but hopefully by next month I'll know a bit more and maybe even start a treatment that will help something. 

1 comment:

  1. I hope that you are able to get more definitive answers as to what the heck is going on with you, and what exactly you might have!