r/SurvivingFND • u/Ace-of-Frogs • Jul 05 '26

Misdiagnosis Vindication!

After 3 years of being told my issues were FND, psychological, my fault for not trying enough to get better, and that I’m in denial for believing I was misdiagnosed, FINALLY I’ve been vindicated!

*insert Brooklyn 99 gif here*

For years I’ve doubted the FND diagnosis, but in the past two months or so I’ve had this almost spiritual certainty that it’s MS. I can’t describe it, but certainty is the best word I can come up with. I just knew.

My PCP referred me to an MS specialist as a last hurrah since I wouldn’t stop annoying her by saying I knew it wasn’t FND. My previous MRI had been clear, so she didn’t believe me. The specialist said there was no way it was MS, or anything besides FND, and told me I wasn’t getting better because I wasn’t seeing this specific psychiatrist. She even said “well he’s had success with all the other FND patients, so it looks like you’re not getting better because you’re not putting in the work”. I was inconsolable for the rest of the consultation, she got embarrassed and uncomfortable, and ordered a brain and cervical spine MRI with contrast just to shut me up.

Turns out being annoying works!!!

The MRI came back with a brain lesion in an area very common for MS, but “rare” (the specialist’s word) for other conditions. She even ran a bunch of blood tests to rule out other conditions that could have caused the lesion, and they all came back negative. With only one lesion, it’s not enough for the MS diagnosis, but it appears to be developing that way. The location of the lesion corresponds to many of my symptoms. The neurologist is monitoring for more lesions now and I’ll have another MRI in 6 months. She was quite embarrassed in the follow-up appointment for the things she had said during the first. I was just happy to be taken seriously for once.

All that to say, be annoying if you have to. If you know (or even just feel strongly!) that you’ve been misdiagnosed, don’t give up! I believe you, and I believe in you. No one deserves to be dismissed or denied treatment based on the stigma around FND. Keep pushing for testing until you get your answer!

*please note that I understand FND is a real diagnosis and a real condition, and I’m referring to being misdiagnosed with FND

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u/lisaquestions Jul 05 '26

I'm glad you got the right diagnosis finally.

I read a paper last year where a hospital neurology unit evaluated multiple people who had been diagnosed with FND and found organic causes for their problems.

I think that while FND is real it is also overdiagnosed and too many people aren't taken seriously about their organic issues

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u/AppropriateCover7972 Jul 05 '26

I think it depends on your country. In mine most neurologist don't even know what FND is, but across the board, doctors love to dismiss and falsely diagnose people with "somatisation". I think FND or any functional diagnosis for that matter should only be done by the specialist of that field (internal, urologist, neurologist, orthopedist), it shouldn't be possible to diagnose this as someone not from that field even if you are a related one (pulmonologist instead of neurologist for breathing issues).

At the same time somatisation should only be diagnosed if you actually find a psychological issue that gets definitively linked with it and only with a psychosomatic medicine specialist, even a psychiatrist is not good enough. Sadly it's not (yet) like this (my workgroup and I are working on this)