6/19/2020 - I have A Diagnosis!!
6/19/2020 08:39 PM
In an unexpected twist, I have been diagnosed with Spondyloarthritis (the exact type is still pending). 

I have never heard of this before. 

I am very confused by what this is. Even trying to find links to put in this entry is difficult, because they tend to say different things... and also don't answer many questions. Here is what I understand so far:
  • it causes inflammation
  • it primarily affects your spine, but it isn't uncommon to not feel like your spine is hurting... because of spine reasons? (idk, v confused)
    • my spine doesn't hurt, btw. It's my hips, knees, and hands. 
  • It isn't an autoimmune disorder, but also kinda is? Sometimes? The doctor said it's basically a "cousin" to an autoimmune disorder?
  • You treat it with anti-inflammatory medications. If that doesn't work you use immunosuppresants and anti-inflammatory medications. 
  • It may go away after a year? Or last forever?
  • It may fuse my spine into one solid spine-boi, but it may not. 
  • It has caused some minor but permanent damage to my finger joints, and possibly my other affected joints.


So yeah, very confused. But happy to have treatment!

The doctor also said I have to get re-tested for autoimmune disorders every 3-4 months for a while because I have all the symptoms of Lupus and she is concerned that it's not showing up in the bloodwork. Apparently the doctor that told me that it's "imposssible" for me to get a rash from sunlight and it's just a sunburn (even when it's clearly a rash) when I was a little kid was full of shit. I also should have been seeing a doctor for the raynauds disease that I get in my hands and feet, and not just saying "I know what it is, so it's fine". Also, I shouldn't have fevers as often as I do, and get sick as often as I do. And a few others. Oof.

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