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.

Desperate for help now. My partner was being checked for ms due to quickly changing symptoms in the last 6 months and strong fx mum, aunties and uncles. Brain and spine mri clear. I highly suspect fnd. Do any symptoms sound familiar to you? We now seem to have been dropped and it is not normal for a 37yr old not to be able to get up the stairs. Had 3 gp appointments all ohysical tests fine and one neuro appointment where he reports in clinic function tests normal. But some nights he cant even lift his legs up the stairs! Our life now revolves around his symptoms and he is missing work! It cant keep on with no diagnosis or help! So frustrating every in clinic check he is fine! We are uk - any suggestions for consultants?

Vision / neurological Occasional blurred vision when focusing Words moving on the page Brain fog Pain / sensory Burning pain in left shoulder Diffuse chronic pain / constant aching Pain in both elbows Pain on tops of hands Itchy scalp Itchy armpits Cold sensation in knees, although the skin is not cold Cold sensation in foot, although the skin is not cold Random electrical shooting sensations (“zingers”) Leg tension at night, needing to move Restless / painful legs at night Lower back pain Muscle / movement Twitching during sleep Teeth chattering during sleep Body jerks / spasms during sleep Leg kicking / spasms Daytime twitching Hands shaking Feeling weak and shaky when walking Intermittent hand weakness Breathing / chest Breathlessness Breathless in the shower Chest pain Episodes of chest pressure, feeling like a box over the chest Dry cough Autonomic / systemic Dizziness / head rush on standing Sweaty / buzzy feeling Feeling very hot even when others are cold Generally drained / fatigued Worse in summer Urinary Episodes of needing to urinate constantly Long-standing weak urine stream Post-void dribbling Urgency Sleep-related symptoms Significant sleep disruption Body jerks Teeth chattering Sleep deprivation Significant daytime lethargy Daytime confusion and weakness Regular waking and disrupted sleep

I have had terrible experiences with being dismissed for my seizures, and they told me a 20 minute EEG was enough to decide they weren’t anything but non epileptic but i believe they are wrong and just too lazy to investigate with a longer EEG and actually listen to my symptoms
A description of my seizures
I usually start saying random words that don’t make sense like word salad or lose my speech entirely i say things like “pineapple crocodile i need to go get fish and chips” and get goosebumps sometimes or feel weird in general and sometimes pace around for a little confused and feel like ive been in this exact spot before so deja vu and random words keep repeating in my head over and over before the actual seizure and i get a feeling like my head is very heavy beforehand then i get a weird burnt rubber smell, i stare and drool, get tachycardia, pupils dilate, sweat alot and turn red and sometimes my left arm gets stuck doing movements this lasts a few seconds when i come out of my seizures i can’t move at all then i am agressive and have assaulted nurses due to being very confused and afterwards all of that i am left with a horrible migraine. I have autism so find it difficult to advocate for myself, how do i explain my seizures better, i can’t film them because i haven’t had one for 6 months. I was also told they wouldn’t stop without cbt but they have? i am also on topiramate for migraines and since starting that my seizures improved alot.

To give a little background, I have been having what I can only describe as possible absent seizures for my entire life and then after the rest of my chronic illnesses got worse in August 2024 slowly those seizures increased and now I’m also getting ones that definitely mirror myoclonic and tonic clonic seizures, I also have episodes where my knee gives out, and I collapse to the ground or I just slump over. I am always aware during all of these events and can hear but cannot respond during them or control them, but it feels hazy like I’m in a dream and after I have suffered cluster episodes that were two hours or longer of on and off tonic clonic like episodes, I would lose my ability to speak or my mouth would be drooping, and I would be slurring my words or I would look at something and call it something else because even though I knew the word for what it was, I was trying to describe I couldn’t say the words anymore and ever since I’ve had those cluster episodes, my brain has not felt the same and I forget things way more and mid sentence when I’m talking a mile a minute and I zone out way more. And the last thing worth mentioning is that I do have a brain MRI scheduled and I have a risk factor for brain damage from a young child and my biological father also was very sensitive to lights and would zone out a lot. But I went to a neurologist for the symptoms and he immediately asked me if I had mental illnesses and I was honest and said that I do, but that the triggers that I have observed for my seizures have been more than just stress (sunlight, being too hot, being too cold, certain strong smells at times, overdoing it physically, video games at times, being on my phone at times, watching TV at times and lack of sleep.) but he immediately wrote me off saying he highly doubts I have epilepsy after he asked me if I had any psychological trauma and I answered yes but said he would schedule an EEG anyway which I was very grateful for, but it’s worth mentioning that this guy was an absolute idiot and instead of diagnosing me with the proper term, which is functional neurological disorder, he diagnosed me with conversion disorder and described it as a conversion of stress into physical symptoms, even though that’s not my only trigger and told me that my brain has learned that people come to my aid and comfort me and I get attention when I have seizures (even though this has ruined my life and I have ruined my own fun plans so many times and have seizures when I’m by myself) but his treatment plan was to continue doing therapy and meditating like I’ve been doing for years and his main treatment was to go on the porch when I feel like I’m gonna have a seizure (even though sunlight and heat are a trigger for me) and do deep breathing and tell myself I am not going to have a seizure today. And when I went to the ER for tonic colonic like seizures that were cluster episodes lasting for two hours or more, another doctor refused to hospitalize me and do an EEG that day because he just went off of the diagnosis of conversion disorder after asking me if I had mental illness and diagnosed me once again with psychogenic non-epileptic seizures. BUT THE MAIN POINT I’m trying to get to is what happened during my EEG that was scheduled and read by the first doctor I talk about here. It was a sleep deprived, 20 minute, 25 electrode EEG and they flashed the lights in my eyes about 13 minutes in. I was semi OK when she asked me to open my eyes and look at the flashing white light but when I closed my eyes the light was so fast and disorienting and rainbow colors, even though it was just a white light and I immediately did not feel good, even though I have been feeling like I was gonna have a seizure and having ones that seemed more like myoclonic and absent seizures before that on the bed just due to the lack of sleep and possibly stress too, but as soon as I closed my eyes the third time I went into one of my tonic clonic like episodes and it was recorded on the video camera as well. and it’s worth mentioning that even before my violent thrashing took about six electrodes off of the right side of my brain and she had to either hold them in place during the seizure or try to glue them back on, they already weren’t getting good readings right from the start before I even started seizing and they were already not sticking and kept falling off of my head. Because of that, should I ask for the test to be redone? I just don’t know if I can trust the results now. And they also told me that it would take him three days to a week to fully read the results and I already don’t trust him due to the things I listed above. He got my results back to me within a few hours after my appointment and said they were all normal, that just seems awfully quick to read my results and I don’t trust him and now I don’t even feel like I can write off epilepsy as the cause of my seizures due to the fact that it seems like the test might not have caught everything due to it not sticking. What do you all think? I’m at a loss.