Undifferentiated autoimmune disease - anyone else frustrated with doctors not talking to each other?
My Mum has been dealing with an undiagnosed autoimmune condition for a while now. After a lot of testing, the best answer she's gotten is "undifferentiated autoimmune disease" - basically, her body is attacking itself but no on knows why.
Just as difficult as the health issues have been all of the appointments and lack of clarity. She's seen multiple specialists, and none of them talk to each other. I feel like each appointment is groundhog day - explaining her whole history again, trying to remember which labs were run when, which meds she's tried, what helped and what didn't. It's exhausting on top of already not feeling well.
She's in a slightly better place now - she's figured out some things that help her body specifically, and the flares aren't as severe. But it took a long time, mostly through personal trial and error, and I can't help but think some of that could've gone faster with better information in hand.
Curious if this is common for others here:
- Have you dealt with specialists not communicating with each other, or having to re-explain your whole history at every appointment?
- Did you find any way to keep track of everything (symptoms, labs, meds, what worked) that actually helped, either for yourself or for sharing with a new doctor?
- If you were never formally diagnosed with something specific, how did you and your doctors navigate treatment without a clear label?
Just trying to understand if what we went through is a shared experience and what we can do as this is an ongoing journey. BTW - this isn't a knock on the doctors, but the system clearly isn't coordinating or working for us. Thanks in advance for any guidance.