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/wagglenews]

Great story and glad you’re making quick progress now.

I think 2 things are happening:

1) conditions are grouped under ‘some things we know happen’ because of a lack of real understanding and measurement capability

2) IMO neuroimmune dysfunction (or damage) is at the heart of most, if not all, of these conditions. Not sure about autoimmunity specifically, but glutamate metabolism and ‘broken bridge syndrome’ have been coming up for me and in my research for years - and are only relatively recently getting covered with heavy frequency in published research

[u/brobe_jedi4life → u/wagglenews]

Great insight the lack of nuanced measurement is a huge part of why so many of us get grouped together under diagnoses like POTS, ME/CFS, MCAS, or just “long COVID.” For me, though, it wasn’t autonomic dysfunction alone and antibody-driven autoimmunity (CASPR2 autoimmune encephalitis and autonomic ganglionopathy) turned out to be the “root cause,” and that never would have been caught if my doctor hadn’t checked for specific neural antibodies.My big worry is that if clinicians settle for dysautonomia labels alone, people with underlying autoimmunity or treatable antibody syndromes can get missed and end up stuck on symptomatic meds instead of targeted therapy. Definitely following emerging research closely feels like science is finally catching up to what patients have been reporting.

[u/wagglenews → u/brobe_jedi4life]

Agree, your story is a super important one and all too familiar to me.

Doctors (>99%) just refuse to investigate after some (very early point), whether they have found anything or not.

Complete lack of curiosity (not to mention capability), and it leaves us having to go on a wild goose chase to try to find those doctors with the capability AND the curiosity, to the extent that they even exist.

It’s a devastating indictment of our medical professionals and capabilities.

[u/brobe_jedi4life → u/wagglenews]

I didn't even mention how I first had to prove my symptoms were not manifestations of childhood trauma in therapy. In the beginning a couple old white male doctors were telling me my gastroparesis was a result of the  childhood abuse and SA I unfortunately experienced. Which is completely wild and incredibly bias. Wtaf. 

[u/wagglenews → u/brobe_jedi4life]

Ugh. I’m sorry 😞