Long, ranty toot ahead!

My doctors and I started to consider that I’m experiencing #dysautonomia this past autumn. I had been referred to the pain clinic that’s part of our local university healthcare system and the doctor I see there referred me to one of the chiropractic doctors affiliated with the clinic.

At my only appointment with the chiropractor they used the time to take a very detailed health history and at the end told me I’d answered “yes” to all but one symptom of dysautonomia. They told me they had thought to take this history because I had been diagnosed with #HypermobilitySpectrumDisorder (#HSD) and my primary care physician also suspected that I have #MCAS.

The chiropractor noted that dysautonomia is pretty common for folks with a hypermobility disorder (60%!) and rheumatologists often miss it and incorrectly diagnose fibromyalgia since they overlap symptoms, including central sensitization. She said she would refer to the two neurologists within the system who deal with dysautonomia.

She then referred me to a naturopath within the same system, without talking to me and wouldn’t reply to messages. Since I have an excellent naturopath already, one who is well versed in dysautonomia, I didn’t want to pay over $600 out of pocket to see another one. The next time I saw the pain doc I brought up dysautonomia/#POTS, adding that my knee PT had remarked on my symptoms and put in my chart that he felt certain I have dysautonomia/POTS and should have a neurological consult.

Since it’s a university healthcare system I always chat with a medical student before seeing my pain doc. The medical student laughed and asked why my PTs or I would suggest something “so unusual”?! He then primed the pain doc to dismiss me even though I reminded them I already had an HSD diagnosis and dysautonomia isn’t uncommon.

I talk to my primary physician and my osteopath, both light up at the suggestion of dysautonomia precisely because it explains several things. Both strongly encourage things like increased salt/electrolytes, doing some of my strength exercises supine or seated, not pushing myself in order to avoid post-exertional malaise. My PT who specializes in hypermobility disorders says it’s rare when patients don’t have some kind of dysautonomia.

I go back to the pain doc and insist that they stop dismissing me. I ask them to honor the neurological referral the chiropractor said she was making in October 2023. They finally make a referral to neurology in June.

I just got a call from the pain clinic to tell me that neurology rejected my referral since there’s no doctors working on this disorder. I don’t know if the two doctors the chiropractor said dealt with it left between October 2023 and June 2024 or of they were just wildly confused. Either way, it sucks and is very frustrating.

The online discourse around doctors in Oregon who treat dysautonomia has been among the lines of, “I heard a nephrologist in Bend is seeing patients!”

To translate that for non-locals, people are suggesting a kidney specialist in a small, Central Oregon town 120 miles away from where we live.

Maybe the Long COVID clinic is seeing folks? My osteopath gave me a handout he grabbed at a doctor lunch seminar on dysautonomia and Long COVID. However, since my dysautonomia is not due to COVID, that’s another referral that would go nowhere.

I am really lucky, my symptoms are mild and I have seen improvements with treatment approaches for both MCAS and dysautonomia/POTS. While I’m not wild about more doctors, I have really hoped to find the right specialists to help me stay on this plateau and not wait until some health event causes my symptoms to worsen!