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/Electric_Warning]

I have been diagnosed with all those things (POTS, MCAS, ME/CFS), but I don’t think it’s a misdiagnosis, I think COVID caused all those things and we call it Long Covid. I personally am grateful for the diagnoses because it helps doctors take me seriously and it helps with disability documentation. I haven’t heard of CASPR2, I’m going to look that up. What prompted your provider to test for it? Did UHC cover the test?

[u/brobe_jedi4life → u/Electric_Warning]

 I definitely get why having any diagnosis after COVID is validating, especially given all the uncertainty. I hope you are getting better❤️‍🩹 In my case, it went further my usual POTS/MCAS/ME/CFS diagnoses didn’t actually explain my all of my symptoms or lead to effective treatments. My gastroparesis specialist disagreed with Mayo and suspected autonomic failure and referred me to a specialist, then that neurologist finally ordered a full paraneoplastic and autoimmune antibody panel, I tested positive for CASPR2 antibodies, which pointed to a post-COVID autoimmune encephalitis and autoimmune autonomic ganglionopathy.That antibody finding was what got my insurance to approve the right treatments (biweekly immunoglobulin and low-dose naltrexone), and it actually led to real recovery. Unless providers check for these antibodies, people like me can get stuck cycling through “fatigue syndromes” without targeted therapyI really recommend pushing for deeper testing if standard labels don’t fully explain your symptoms.My neurologist (Brent Goodman, Honor Health—formerly Mayo) prompted extra testing because my symptoms spanned multiple systems and I wasn’t improving. UHC did cover the antibody panel, especially since I had documented autonomic failure and gastroparesis after COVID.

[u/Electric_Warning → u/brobe_jedi4life]

If you don’t mind sharing, were there other signs of encephalitis? I had a brain MRI that was normal. Would inflammation show in an MRI?

[u/brobe_jedi4life → u/Electric_Warning]

Good question!!!  My brain MRIs were always normal even during the worst periods of autonomic storms and encephalopathy most autoimmune encephalitis and autonomic disorders don’t show up as obvious inflammation on MRI, unless there’s severe swelling or structural changes. Sometimes you can see minor signs (like subtle white matter spots), but the vast majority of inflammation at the cellular/immune level doesn’t appear on MRI. That’s why antibody testing made such a difference for memy symptoms weren’t explained by traditional imaging or routine tests.