My Dysautonomia Specialist Appointment: A New Diagnosis and Financial Worries

Today I had my dysautonomia specialist appointment. I was really nervous but I like the clinic team and they actually seemed to understand what I was going through. Unfortunately I scored high on a hypermobility-EDS scale so that’s something new I hadn’t considered. I’m being sent for genetic testing and an autoimmune panel to try to figure out what is causing some symptoms. I’m generally nervous primarily because the testing is going to be so expensive. The tilt-table test is $2,000+, each appointment is $200+, blood work was $200, and I don’t even want to imagine how expensive generic testing will be. I’m glad I found a treatment team that can help me but I feel helpless when it comes to the expenses. Does anyone know of any medical grants I can apply for? Or any financial assistance programs for college youths? I appreciate any help 💕

Your answer

EDSdancer

1y ago

Ugh I wish the US had more affordable healthcare. I’m also in college and have hEDS and POTS if you want to talk. My cardiologist did a “poor man’s tilt table” test where he put a pulse ox on my finger and a bp cuff on my arm. Then he had me relax laying down and recorded my stats. Then I sat up and waited two minutes before he recorded my stats again. Same thing for standing. Much less expensive than an actual tilt table test

beingnotseeming

1y ago

I’m sorry I don’t know of any grants or anything. Medical bills can be so daunting. I hope you’re able to find something to help with them and I hope you get the answers you need too!

Officialishness

1y ago

thank you so much 💕 Definitely has been difficult being underinsured and needing to see specialists but I’m happy to have some answers. Thank you again!

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