Undiagnosed and Not Being Taken Seriously
I am currently undiagnosed. I hate starting my "story" off that way but...it is what it is.
Since I was a teen, my back has always given me problems; usually, after a couple of months of chiro appointments, it would be better. Then 4 years ago I wrecked my car, rolling it 4 times before coming to a stop. From that moment on is when my back seemed to be noticed by my family members; all the other times I complained about my back or hip hurting seemed to mean nothing until after the wreck.
Learning I have arthritis in my spine
Summer of 2018, I came home from a family party and couldn't move. The next morning, I couldn't even get out of bed. I ended up having surgery for a bone fragment and herniated disc. X-rays showed months later that I have arthritis in my spine...that's it. Nothing more is said, nothing is done.
Join pain and fatigue
Fall of 2019, I can't stay awake, every joint in my body hurts, nothing feels right. After telling my PCP this 3 times, I'm sent to a rheumatologist, who acts like I am a waste of time and energy and tells me there's probably nothing wrong with me and sends me on my way, crying, with a follow-up appt for 3 months later.
Taking control of my health care
I get the courage to call the office back and tell them if they can't get me another doctor, I'm leaving. I get put with a new doctor who looks at my labs from my PCP and comes to the diagnosis of CREST Syndrome. This only explains 5% of my issues but it's something.
I'm put on no meds and nothing is really changed. 3 months later I go back only to see a nurse practitioner, who I can tell didn't even read my file. He orders some x-rays to "rule out Spondylitis".
I just want answers
And of course, my follow up to those x-rays should be May 7th but got postponed due to Covid-19. I was hoping to finally get some answers! Everything I have read, my symptoms match almost identical to those of one form or another of Spondyloarthritis. I just want answers!
So there is my undiagnosed story in a nutshell!
Do you use the word disability to describe your AS?