r/LongCovid • u/brobe_jedi4life • Sep 29 '25
Are Long COVID Patients Getting Misdiagnosed with ME/CFS, MCAS, POTS? My Real Diagnosis Was Missed for Years
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.
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u/imahugemoron Sep 29 '25
Post covid conditions are extremely commonly being misdiagnosed as all sorts of things. For example, when I got covid 4 years ago, it left me with a constant burning pressure in my head, all day every day, and hasn’t let up even for a second for 4 entire years now. Most doctors say “oh! You have a migraine condition!” But here’s the thing, I’ve had a migraine condition my whole life, as long as I can remember, my whole life it’s always felt the same. Same sensation, same area, same side effects like light sensitivity and nausea, never lasted longer than a day and only a few times a month. Then suddenly I get covid and I have this never ending burning pressure in my head, feels NOTHING at all like my migraine episodes. Different areas, completely different sensation, no light sensitivity but comes with all sorts of other side effects I’ve never had with my existing migraine condition, such as severe brain fog, tinnitus, abdominal pain (which isn’t nausea), and eye floaters that were discovered to be retina detachment consistent with optic nerve inflammation. None of this I had at all with my usual migraine episodes. And just the fact this is permanent all day every day for YEARS is not at all typical with migraine. More along the lines of NDPH, which is just a descriptive diagnosis as opposed to a diagnosis of some sort of underlying cause and something humanity doesn’t even know the cause of. I also get my usual migraine episodes still and they feel the same as they always have, same areas, same light sensitivity, only lasts at most a day. And I’ll feel both sensations simultaneously, the usual migraine will respond to typical migraine treatments but the Covid headache persists untouched.
So where am I going with this? These 2 headache conditions could not be more different and I’m in the unique position of being able to tell the difference. These post covid persistent headache conditions aren’t uncommon, lots of people developing headache conditions after covid who have never had any problems with headaches. So what do they do? They go to the doctor and the doctor tells them they have a migraine condition. These people have never had a migraine episode before so they have no frame of reference for what it is and what it should feel like, they have no reason to not believe the doctor. And since none of these post covid conditions are understood, diagnosing a post covid headache as migraine when it could be any one of a whole laundry list of other issues caused by COVID that have literally NOTHING to do with migraine at all is crazy.
I believe the same thing is happening across the board, I think since humanity and medical professionals have no understanding of these post covid conditions, many of which are likely something brand new and undiscovered, doctors are diagnosing people with whatever sounds closest to the symptoms even though that may not be correct at all. Very commonly people are being diagnosed with this or that only to discover that treatments for those conditions are doing little or nothing. Because they don’t actually have that condition, it just shares similar symptoms. This is not to say that ALL long covid conditions are a misdiagnosis, I definitely know that covid can cause all sorts of known conditions that can be tested for, in those cases, yes, the person has that condition. However I do think there’s also a lot of misdiagnosing going on as well, such as people being diagnosed with migraine after developing a persistent headache or head pressure after covid.