Saturday, May 14, 2011

A New DIAGNOSIS!!! sorta

Okay, it's not actually a new diagnosis.
It's just that I recently received my medical file from my rheumatologist in Fort Collins, Colorado.

I have been planning on finally seeing a RA doctor here in Texas and as there are so many in my area I figured I'd just take my file to each one for them to review instead of having my old doc fax the file to numerous new docs. I plan on 'interviewing' them to see if they really fit my needs of an actual medical doctor but one that accepts my no pharma lifestyle, just like my previous doctor in Colorado. So I called and my medical records were mailed to me.

Upon casually scanning them it became quickly apparent that the term 'rheumatoid arthritis' was missing from my file.  Then anxiety set in.  Do I even have RA? Have I thought all these years I have it and I actually don't?  What do I have if I don't have RA? And worse yet, Is this all in my HEAD?!  In my memory I thought I was told I had blood negative rheumatoid arthritis but I was led to believe it was the same thing regular RA.  

After tearing my file apart I finally found my actual diagnosis:
'seronegative inflammatory auto-immune disease with coexisting fibromyalgia'

Ok...... that's interesting and slightly intimidating but it does sound more like what I thought.  Whew!

And then I found this little tidbit in the notes following our last visit:
'possible ankylosing spondylitis'   'order HLA-B27' blood test

This is what ankylosing spondylitis does to a person.
 Now that is new.  I've never even heard of that one.  And, as I moved to Texas almost immediately after that last appointment I never went for that blood test.

So it seems that I do, basically have a form of RA, though possibly milder than typical RA.  It depends on what website you read.  And this ankylosing spondylitis thing, well, from what I've read on the internet it affects more men than women 3:1 so there is hope there.  Then again, my diagnosis of (lets call it SA) is also more common in men than women 2:1. 

Looks like everything I do in my life, intentional and unintentional, is uncommon.  

I have high hopes I don't have this nasty looking disease.  I believe it's entirely possible my lifelong back pain is just that, plain old normal back pain of a klutzy tall girl with bad eyesight (15/20 now thanks to lasik).  Then again, I've been complaining of back and neck pain my entire life.  When I was a child I was taken to all sorts of specialists and eventually told I had mild Scoliosis.  I even wore a back brace on and off for awhile but I'm sure my parents couldn't keep in on me too long.  I remember I could take it off myself and often did when they weren't looking.  (Yes, I've always been trouble :) So maybe my backpain and stiffness is scoliosis, maybe it's ankylosing spondylitis, maybe it's just the SA. Either way, I've got to find out or my very vibrant imagination will get the better of me.

I've been planning on heading back to Nebraska for a visit this summer.  Yesterday I was wondering how I'm ever going to find a doctor that accepts my beliefs yet will still 'treat' me. 

My previous doctor in Fort Collins was perfect.  He actually was the first person to recommend changing my diet as he and his doctor wife are both vegetarians. When I told him I'd found Andrew Saul's book, Fire Your Doctor, he laughed and agreed it was a great book and he'd read it several times himself.

So, even though I'd just received my medical file from my previous doctor, I called up his office and asked if I could get in to see him while I was in the area for a visit.  Sure enough, I was able to get into a canceled appointment.  Yea!  I figure I can see him at the same time I see my family, about once every six months.  It's not perfect but at the same time I won't have to go through the hassle of finding one who agrees with my beliefs and he won't have to start all over trying to re-diagnose me. 

I'll update you about my doctor appointment at a later date.