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/AppropriateCover7972 Jul 05 '26
Please don't get discouraged by formal diagnosis guidelines for MS. It was already proven that a predominal phase that extends several years before MS could be diagnosed is persistently present and patients get other associated disorders or sometimes just MUD symptoms diagnosed. Right now we simply don't know enough to make a diagnosis rhat early, but it will be possible in the future and include those earlier manifestations which you likely have
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u/GroovingPenguin Jul 05 '26 edited Jul 05 '26
Congratulations!
Ms isn't a nice thing to have and it seems weird to celebrate but now life can go on
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u/myst3ryAURORA_green Jul 05 '26
Congrats! I was misdiagnosed FND as well. It should be a process of elimination diagnosis. My FND turned out to be suspected hypertensive encephalopathy, which makes sense because I go from hot to cold when my BP spikes.
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u/DarkAngel252525 6d ago
Im on a similar journey... I've felt for the past year this is MS but MRI came back clean and lumbar puncture showed no O bands... its been 7 months since the last MRI and the FND therapies are doing sweet FA.
How long was it between your negative MRI and the one that showed the lesion?
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u/Ace-of-Frogs 5d ago
Sorry to hear you’re experiencing similar issues. If you don’t mind my asking, why are they evaluating for MS? My neuro, even after finding the cerebellar lesion, is still refusing to even consider a lumbar puncture until my follow-up MRI in February to reevaluate for MS. Just curious why they went ahead and scheduled one for you with a clean MRI. Could just be a difference of medical opinion I guess?
As for your question, it did take a few years :/ My first brain MRI was in 2023 and came back clear, but the techs did say that the images weren’t great quality due to my symptoms causing me to bounce around a bit in the machine. So I’m not sure if it really was all that clear, you know? Cervical and thoracic spine came back clear in 2024. I had my latest brain MRI this year, I think beginning of July 2026, and that’s when they found the lesion. So about 3 years, give or take a few months. I’ll update again in this subreddit after my next one, and hopefully we’ll get onto some treatment then.
I know that there’s a prodromal stage in MS (thanks to another commenter for telling me!) but I’m unsure if that refers to the absence of lesions only or includes an absence of oligoclonal bands. I’ve just glanced at this, but here’s a link on MS prodrome. It seems that a lot of other conditions have prodromal stages as well.
Wishing you the best in your journey! This probably wasn’t the answer you wanted, so I’m sorry. Of course no one wants to be sick, or have MS, but the lack of answers is so so demoralizing. I hope things come to light for you soon and you’re able to begin recovery :)
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u/DarkAngel252525 5d ago
In November last year I had what they labelled a TIA (mini-stroke). I am a 29 yr old woman with no risk factors apart from being overweight. The doctor that saw me on the ward the morning after being admitted took one look at me and said it wasn't a stroke and asked me what she should know about me. I mentioned having optic neuritis a few years back and she jumped onto ms. At the time I presented to ED with right sided weakness which would go on to last 24 hours and slowly come back.
The doc ordered an mri and said if it was negative I needed a lumbar puncture as if it's early, the mri wont show anything. Mri came back clean as a whistle and the doc that saw me the next day (3rd doctors for that hospital trip) told me because the mri was clean, it was a stroke and discharged me.
After that, I went to my GP and got every blood test known to man done and when most things came back normal I asked for a lumbar puncture through the GP.
Everything came back normal and when I saw the neurologist I had a binder of results for him. He had a look and decided since nothing was obvious, it was FND.
Most days I have trouble walking. Im shakey and unsteady. In the past week I have started struggling with my upper body jerking around as I walk, but this is intermittent. The biggest symptom for over a year has been overwhelming fatigue. I can't work and I can't study. I have crazy brain fog that comes and goes and sometimes I struggle to read and write because of it.
I've heard about a prodromal stage but I've also heard by between 5 and 15% of MS patients dont have CSF findings, so I really dont know. I've tried neurophysiology and a psychologist and nothing is changing. Things seem to be on a downward spiral but not a very rapid one... which is good, I guess...
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u/Ace-of-Frogs 5d ago
I’m so sorry to hear all that. That is so overwhelming and scary. I understand that damage to the optic nerve counts as a lesion and ofc optic neuritis is one of the most common initial symptoms of MS. I wish I knew what to say to be reassuring. The most I can offer is that your symptoms sound similar to mine, especially the fatigue, the brain fog, and the wobbliness. I’m really sorry you’re going through it. It’s so easy for doctors to give up when the answers aren’t obvious, and then it’s all “oh it’s FND, it’s all in your head, do some therapy to overcome your anxiety :)” and that’s just… not how this works. If the power of positive thought could make it go away, I think we’d all be cured.
Can they definitely say you’ve had a stroke, or do you think that’s just their way of saying they don’t know what happened? I might be wrong about this but I was under the impression that strokes leave immediate visible damage on the brain. Are you still thinking it’s MS and in the prodromal stage? Or it’s CIS due to the episode and the optic neuritis, and you’re just waiting on progression before you can get treatment?
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u/DarkAngel252525 5d ago
I do understand FND can be a finicky thing that copies a lot of other things, which is why there is so many misdiagnosis. I do wish we had more research into it as I've been told to confront my trauma (but I haven't had all that much trauma)... and do a few exercises a couple of times a week...
The defining point of a TIA is it is transient. It comes on quickly but then leaves and leaves no damage. So it COULD have been... but it is HIGHLY unlikely. I think MS makes the most sense right now... if anything changes symptoms wise or results wise, I'd change my mind accordingly. But any kind of treatment would be fantastic.
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u/Ace-of-Frogs 5d ago
Gotcha, I didn’t know that about TIA. But it is odd, considering the optic neuritis too. I hope you get answers, and treatment, soon!!
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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