r/SurvivingFND

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

First, sorry in advance if I get a bit rambly. My brain fog is acting up and I'm having complicated thoughts and feelings about this.

So, I got diagnosed with FND a couple of years ago. My symptoms aren't the worst, but they have made it so I can't work full time and they are getting worse and have stopped me from working.

My neurologist isn't the best. He did the brain wave test to see if my dissociative seizures were real seizures or not and then looked at videos I sent of the sudden body movements. He didn't see me in person before giving me the diagnosis. When things started getting worse, he saw me in person and did the Hoover Test and I tested positive. He said that proves the diagnosis is right and wants me to continue our "treatment plan".

The so-called treatment includes CBT and that's it. Nothing to assist with pain or stopping my body jerks. No follow up appointments. Just CBT. Sorry, had to vent a bit there.

Okay, so... As mentioned, my symptoms are getting worse. From my understanding (and my therapist's understanding), FND is not a progressive disorder. I already have an appointment to get a second opinion and recently ending up in Urgent Care because my left arm decided to stop working for a few days. My current neurologist just asked for more videos and said to continue CBT and the Urgent Care doctors were very frustrated I have not had an MRI (I felt seen and heard by them and it was great).

What I'm asking this subreddit for is help preparing for my second opinion appointment. I'm going to create a Venn diagram of symptoms for FND and MS. I'm trying to brainstorm symptoms that are uniquely FND and not MS. I know it's a very open ended questions and I have also been Googling a lot, but Google has been not the best because of the AI junk.

I'm also going to be positing in a MS subreddit asking the same thing.
And just to be clear, if it actually is FND that is my diagnosis, I will be okay with that. I will be a lot more pushy about getting actual help though.

(Sort of a repost from the main FND sub but reworded slightly)

So for context I was diagnosed with FND after getting an unexplained stomach bug following withdrawal from a heavy cocodamol and thc edible habit in mid 2025 that ended with me losing 30lbs and being unable to eat most foods. About 6 weeks into starvation my “tremors” randomly developed into full body convulsions and uncontrollable jerks, vocalisations, tics, auras and hallucinations etc. Haven’t ever been offered an EEG, MRI or any testing but it seems like it’s off the table since my symptoms don’t seem consistent with epilepsy according to docs. Blood work was all normal at the time except slightly raised inflammation markers that were supposedly related to the stomach bug.

Anyway from doing my own research I’ve found out that my symptoms only happen in the hour after I eat a food that’s high in free glutamate (so MSG, soy sauce, tomato paste, mushrooms, spinach, essentially hundreds and hundreds of everyday foods and additives I’m no longer able to eat). Basically all the stuff that has umami flavour it seems. Even accidentally eating a few mustard seeds in a sandwich or a single piece of chocolate will set me off into multiple days of feeling as if each side of my brain is disconnected and that one eye is higher than the other/one side of my body is bigger than the other and severe sensory disturbances, Tourettes style tics and vocalisations and seizures like that. It somehow feels like I’m having some kind of migraine with shock like jerks where I feel as if I’m being pulled out of my body for a split second qnd my vision falters. This has been getting worse over time to the point where after a year the tiniest amount of tomato paste or canned tuna will trigger head pressure and feeling like fireworks are going off behind my eyes after 20 minutes and then the involuntary movements start.

Weirdly, the things that can help to abort these episodes temporarily (for the duration the drugs work) are ibuprofen and paracetamol?

My neurology registrar (have never been able to see a neurologist on the NHS because of the functional label) thinks it’s something to do with a gaba/glutamate issue but in all of the literature and even forums about FND I’ve never seen a single person say they have the same issue. I’m at my wits end at this point because there seems to be nothing to do other than avoid hundreds of foods and never be able to eat at a restaurant again lol.

I guess I’m wondering if anybody else has anything like this issue?

I’m feeling so down and scared and alone. I was diagnosed with fnd in March. I probably also have some dysautonomia. I’ve been trying to get better but I feel unwell 24/7 and feel like no one understands. (I have a movement disorder and some dizziness). I’ve been trying many things to get better (and I did have some improvement in May but have plateaued since). I don’t know what else to do and am afraid I’ll be like this forever. I’ve also had treatment resistant depression for 20+ years and worsening anxiety for the past 4 years (since I turned 50 and got COVID for the first time). I’ve been trying to keep up my part time job while I do a ton of appointments and occasionally make myself do things I used to enjoy. But I’m just feeling so down and hopeless. Thanks for letting me vent. I’m open to any and all suggestions. Thank you in advance.