Most patients with Dysautonomia (and other “invisible” illnesses) seem to end up having A MILLION TESTS. Some are normal… Some are not and lead to MORE TESTS. In the past 8 months I’ve had:
•Blood work – I don’t know, I’ve probably given liters, maybe gallons.
•Brain MRI and MRA
•24 hour Holter monitors (2)
•Maybe 20+ EKGs
•Ultrasounds: heart, neck, abdomen, pelvis (2)
•X-rays: chest (4 or 5), spine (2), neck, hand
•Endoscopy with biopsies
•Visual field exam
•Allergy testing for environmental and metals, foods to come
•Hormone testing (2)
•EMG upper nerve conduction
•Thyroid biopsies (3)
•Tilt Table Test (FINALLY – this is one of the tests to help confirm if you have Dysautonomia)
I’m probably missing a few but whatever! You get the point. Some of my health issues, like the arthritis, degenerative discs disease, and hernia may be incidental findings and not due to Dysautonomia. They could also be part of Ehlers Danlos hypermobility. This is the twisted web my mind obsesses over day in and day out: trying to figure out what is causing what, what is related or not related, and so on… I’m not a patient person by nature and I’m probably the best worrier you’ve ever met! I don’t know if this has been a bigger struggle physically or mentally for me but I’m leaning towards the latter.
Fortunately for me, a neurologist I originally saw for my migraines realized something may be up when she poked me with a pin all over and I could barely feel it. She referred me to a university nearby that has a department specializing in autonomic disorders. She thinks I have some sort of neuropathy but was holding off on testing because of my referral. She knew they would do all the necessary tests. The wait is long though. I was referred two months ago, in December, but they still have me on a wait list just to schedule an appointment. Their best guess was I’d get in sometime this summer.
To at least try to get a baseline diagnosis, she wanted me to have the tilt table test (TTT) done through her hospital’s network. My cardiologist had already refused to give me the TTT but she wrote a recommendation for it and sent me back to cardiology, hoping he’d change his mind. He didn’t, but he did refer me to an electrophysiologist (EP) who agreed the test was a good idea. FINALLY! I had the TTT last week and it confirmed I have POTS – Postural Orthostatic Tachycardia Syndrome. I meet with my EP next week to go over everything.
During the TTT, they generally give you an IV and hook you up to monitors – EKG, blood pressure, and pulse ox. I was told no food, fluids, or meds 4 hours before my test. After laying down for a bit and recording your resting vitals, they tilt you up (mine was at about 80 degrees). You’re up for anywhere from 45 minutes to an hour, or until you pass out. They only kept me up for 30 because once my pulse shot up after they tilted me, it never slowed down. I was starting to try to move a lot, was struggling to breath, and started seeing flashing lights. They got all of the info they needed so they didn’t make me stay up the whole time. Whew. So, there it is – I have POTS but that’s all we know for now.