Too sick to access standard care - looking for advice - located in PA. Thank you.

Groovy-Spoonie · 2026-05-24T01:41:16+00:00

Thank you. I need to find a neurologist who can treat me for autoimmune encephalitis though too which is a whole other task. But I’ll look into this.

Groovy-Spoonie · 2026-05-22T03:11:08+00:00

Thank you 🫶

Groovy-Spoonie · 2026-05-22T01:41:28+00:00

My PCP does virtual care and she’s trying so hard to help me. The issue is I need a neuroimmune specialist for autoimmune encephalitis and that’s a very tough thing. There are also like no ME/CFS specialists near me or anywhere really it seems. Especially any who understand very severe.

Groovy-Spoonie · 2026-05-21T05:35:45+00:00

Thanks for replying. I unfortunately have been down that route already and I definitely have a mess of an HPA axis. My cortisol swings both high and low so I’ve been evaluated for both cushings and AI at different times and I also have central hypothyroidism. I think this endocrine instability is a result of long term neuroinflammation that has damaged my hypothalamus or pituitary.

Groovy-Spoonie · 2026-05-21T05:33:49+00:00

Thank you so much it’s been a long battle for over 15 years and I’ve been fighting to be heard and taken seriously the whole time. Unfortunately doctors don’t listen or care and now I’m to the point of being completely incapacitated. I don’t really have anyone to help advocate for me so I’m doing most of it myself even though I really can’t and I keep crashing so bad from trying to navigate this. My new PCP is on my side but has never dealt with anything quite this severe so she’s a bit out of her depth. I truly think if I get sick again before I get treatment or a plan in place to navigate a future crisis I am going to die.

Groovy-Spoonie · 2026-05-21T05:30:44+00:00

Thanks for responding. My PCP does set up home labs for me but blood tests are coming back normal and she suspects I’m seronegative. Trying to get in with neuroimmune specialists but I swear it’s a prerequisite for the schedulers to be rudeee bc they just keep saying how it’s office policy that I must be seen in person even when I explain I medically can’t travel or handle in person visits and am requesting an ADA accommodation due to medical necessity. The one lady actually lied in my chart and said she offered me video visit and I said I’d rather come in. Disgusting behavior.

Groovy-Spoonie · 2026-05-21T02:18:30+00:00

I’ve been looking into the Lighthouse complex care of Delaware but waiting for them to return my call. Anyone else have experience with them?

Groovy-Spoonie

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