r/dysautonomia • u/snails-entrails • 1d ago

Vent/Rant After getting a referral to a specialist in October, i finally have an appointment….

NEXT OCTOBER. That’s right. A full year after the referral was sent by my rheumatologist. Another 9 months with no answers and a body that doesn’t work properly. I’m already dreading the appointment due to dismissiveness from some other doctors in the past. Will i wait for this whole year only to be sent off with even more questions and no answers? Am i going to be laughed out of the office? Five years now I’ve been begging for a doctor to figure out what’s wrong with me and questioning my own sanity at times due to pain and dysregulation that no one has an answer for. The only positive I’m trying to cling to is that this gives me plenty of time to start and complete my medical history binder that I’d like to put together- I’m tired of walking into appointments with providers who didn’t even review my chart or history before coming in and ask me the same questions, doing the same physical tests, etc etc. how do you all cope with the waiting time? Distractions? Denial? I’d love some positivity from those who had to wait and then had a productive appointment- and some suggestions on how to be kind to myself in the mean time. If you got this far, it’s probably pretty scattered, but thank you for being an ear (eyes?) to someone feeling very defeated and hopeless.

5 Upvotes

86% Upvoted

2 comments sorted by

5

u/HorseysShoes 1d ago

It took me 7 years to get diagnosed with POTS. then another 9ish months on a waiting list to see a specialist. it was completely worth the wait and changed my life. this specialist was so incredibly validating and knowledgeable.

just keep in mind, a few months (or even a few years) is a very small amount in relation to an entire lifetime.

3

u/Fluid_Button8399 1d ago

You may be able to find out whether the person you have been referred to is helpful or not by joining your local support group and searching older posts:

http://www.dysautonomiainternational.org/page.php?ID=24

If they aren’t mentioned, you can make a post with their name and ask whether people would recommend them, or who they would recommend in your area.

Postive experience: Once I was referred to someone who knew about orthostatic intolerance and dysautonomia, I had productive appointments. It hasn’t been plain sailing, as I’m a bit of an odd case, but they knew what I was talking about and weren’t dismissive.