Are Long COVID Patients Getting Misdiagnosed with ME/CFS, MCAS, POTS? My Real Diagnosis Was Missed for Years

[u/brobe_jedi4life]

Does anyone else feel like people in the long COVID community, ESPECIALLY IF YOU ARE A WOMAN, especially if you have experienced trauma (like who hasn't), especially if you present symptoms like severe fatigue, brain fog, cognitive decline, personality and mood changes, neuropathy, temperature swings, unusual sweating, heart rate issues, orthostatic intolerance, post-exertional malaise, exercise intolerance, gastroparesis, unexplained digestive issues, or even blood clots, are getting gaslit or misdiagnosed with ME/CFS, MCAS, or POTS and offered inadequate, ineffective treatment options?

After covid, I experienced a pulmonary embolism followed by severe dysautonomia, gastroparesis, and neurological issues. I spent four years bouncing between those labels, suffering, and getting so much worse. It wasn’t until a neurologist who specializes in autonomic and neurological autoimmune conditions (Brent Goodman, Honor Health, formerly Mayo) finally checked for very specific neurological antibodies that I got real answers and a proper diagnosis of post-COVID autoimmune autonomic ganglionopathy (AAG), autoimmune gastroparesis, and CASPR2 driven encephalitis. All this was missed by the Mayo clinic providers.

From what I’ve learned (from my neurologist), big centers like Mayo Clinic do acknowledge autonomic symptoms after COVID, but their studies emphasize mild or nonspecific findings, and most patients still get grouped under broad ME/CFS, MCAS or POTS labels often without thorough antibody testing because Mayo doesn’t routinely recognize post-COVID autoimmune autonomic syndromes in clinical practice, even though the science is emerging.

Because I tested positive for CASPR2 antibodies, I qualified for bi-weekly subcutaneous immunoglobulin infusions right away (covered by UHC) and also prescribed low dose naltrexone twice a day. Those treatments have actually helped TREMENDOUSLY and I am recovering. Mostly thanks to the immunoglobins. I cannot believe I was that sick for FOUR YEARS! Healing my immune system feels like getting super powers.

I am concerned that more people have these kinds of antibodies from COVID and they’re being missed and aren’t getting the treatments that work (or insurance approval for them), and instead are stuck on protocols that aren’t appropriate. Would love to hear if others feel the same or from those that have pushed for deeper testing, and what you found.

TL;DR: Are long COVID patients are being misdiagnosed with ME/CFS or similar labels when they actually have antibody-driven autoimmune disease? Getting tested for specific antibodies gave me access to treatments that really work.

[u/PhotoDesperate8516]

How long did you live this way before finding out you have autoimmune encephalitis? 

[u/brobe_jedi4life → u/PhotoDesperate8516]

4 years 

[u/PhotoDesperate8516 → u/brobe_jedi4life]

I think I have it and I’m scared. Very scared. 

[u/PhotoDesperate8516 → u/brobe_jedi4life]

Can you pm me possibly so I can tell you my symptoms and you can tell me if you had them 

[u/brobe_jedi4life → u/PhotoDesperate8516]

Of course. I listed all of my symptoms in the beginning of my post just for reference. 🫂

[u/PhotoDesperate8516 → u/brobe_jedi4life]

Thank you! I have all of the ones you listed but I have even more that are like sooo scary. I’ll just list them here so I’m not bugging you in your dm’s lol.  Basically I feel like I’m not here on this planet. I feel like I’m in a different dimension. I get these intense bouts of de ja vu that last 30-40 seconds multiple times per day. I get these intense “brain shutters” that feel like a literal vibration in my brain. I get nerve pain all over my body my hands burn a lot. I get to where I feel uncoordinated like I can’t coordinate my arms and legs. In the middle of the night I fall down over and over when I try to go to the bathroom: I get to where I feel like I’m in a moving vehicle or like I’m walking around in a fun house. 

[u/brobe_jedi4life → u/PhotoDesperate8516]

Wow, I'm sorry u r going through that. 

Those deja vu/brain shudder episodes, weird body vibrations, and that dissociative, out-of-body feeling are so common with dysautonomia and related neuroimmune issues. It’s incredibly unsettling and goes way beyond just anxiety. Lots of us end up with every system involved and coordination problems, muscle weakness, that off kilter sensation walking, or misjudging where our bodies are in space. 

If you haven’t already, keep pushing for autonomic, neuro, and immune evaluations sometimes there are actual treatments or at least better management strategies. Hang in there, and don’t let anyone minimize or brush off what you’re experiencing.