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Another frustrating appointment
Autoimmune Diseases | Last Active: Nov 19, 2021 | Replies (37)Comment receiving replies
How does one know if you have a autoimmune Disease? I seem to be chasing pain since my first back injury in 1978, I now have memory, urology, scaring pain from spine nerve surgery, protein in my spinal taps, migraines, and lung issues. How do I get a team of doctors together and figure something out as a team; they each treat there area of expertise, but not my whole body.
Replies to "How does one know if you have a autoimmune Disease? I seem to be chasing pain..."
@gcranor you’ve asked a good question and the super simple answer is, you don’t know. I was sick for about 1 year before i was diagnosed. My sister had been recently diagnosed with an AD, but the emergency room doctors weren’t listening. They just wanted to stabilize me and send me home. Ive since learned that they aren’t trained to recognize vague complaints; they learn what to do for gunshot wounds and car accidents. Big difference.
https://www.newswise.com/articles/know-your-familys-autoimmune-quotient-aq-campaign-highlights-national-autoimmune-diseases-awareness-month
This article explains quite well what you can do to become your own advocate. Start by doing an autoimmune disease family history. You want to look at the more familiar AD like diabetes and multiple sclerosis.
https://autoimmune.org/disease-information/
You can get an extensive list at the AARDA website
Let me know what you learn!
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This is just my opinion but I think the only way doctors work as a team is through a health facility or teaching hospital that has a multidisplinary teamwork approach -- "Multidisciplinary teams (MDTs) are the mechanism for organising and coordinating health and care services to meet the needs of individuals with complex care needs. The teams bring together the expertise and skills of different professionals to assess, plan and manage care jointly." --- What are MDTs and why are they important to integration?: https://www.scie.org.uk/integrated-care/research-practice/activities/multidisciplinary-teams
Lots of ways to work with your doctors and that can be a challenge sometimes but it's a two way street and not always the doctors fault. Lots of tips and suggestions here: https://patientrevolution.org/how-we-revolt and other pages listed under the How We Revolt menu at the top.