Dr update

Woke up from a nap to Lyle finishing up the phone appt with the GP.

Supposedly went very well, but after our initial ME appt last January, we’re all too aware appt vibes CANNOT be trusted, as #doctorsaredickheads 🙃

But Lyle was on the phone for over 20mins 😅

He went through my symptoms – seizures, orthostatic intolerance (inability to sit without losing consciousness, HR increasing by 80+bpm upon standing), chronic pain, migraines, PEM/PENE, how limited my life is, & he was able to say a private occupational therapist had evaluated me & prescribed a stairlift, wet room, & railing (still not sure we’re getting all 3, not heard from the grant people or our landlord).

Lyle said the dr seemed pretty horrified at how we’d been messed about & left to struggle alone so long, which is a good sign. She could see we’d been trying to find answers for my seizures since 2017, that I’d had an abnormal EEG reading, & that nothing had happened since. She said it wasn’t acceptable that I’d been left with no diagnosis in this condition. She’s talking with the head GP of the surgery to find out how we’d go about getting an ME diagnosis with no specialist, & we’re calling back mid next week.

I so, SO want this to actually be positive & a step in the right direction…

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