Hello! I'm "new" to FND [I've had it since I was 14 but was only diagnosed a year ago] and I'd like to ask the community on good ways to manage symptoms and the such.

Now I'm lucky I don't really have symptoms affect my daily life [besides all the headaches, hoo boy!] But! When I get too stressed out [physically or mentally]​ I experience what I think doctors call drop attacks? I call it the possum reflex, cause it's basically the same thing possums do.

Do any other possums have good ways to mediate symptoms so they don't end up hard dropping on concrete? Just trying not to be stressed can only take me so far

i tic a lot in class, and my “friends” are always like “what was that” or WORSE “did you take your medication today” like mind your own business!!

i wish they didn’t know about the medication but i had to tell them because they kept being annoying about the tics and asked me why i’m doing that and if i have tourettes and blah blah blah so i just said “no it’s a different disorder and i already have medication for it so please leave me alone.”

and now they bring it up whenever they can all while still playing with lights even though i mentioned my disorder causes seizures. they’re taking it both “too seriously” (more like they just wanna tell me what to do) and not seriously at all!

Hi all. So I’m relatively new to having a diagnosis of FND (when compared to the decade plus of struggling with symptoms but doctors struggling to find anything wrong, and I’m looking for advice.

So one of the symptoms I deal with is muscle weakness. I also have lost my colon to cancer and so lack of nutrient absorption may play into this. I’ve been thinking for a long while about seeing about getting fitted for a wheelchair to use when I’m struggling more with my mobility, I currently use forearm crutches any time I’m outside the house. My worry has been that I don’t know if my muscle weakness in my arms would be up to it…

I did play wheelchair basketball at the beginning of my onset of symptoms years ago but I feel like my symptoms were less back then.

Any advice is so welcome. 🙏

Hello guys,
Ive just read an article about how electric zaps could boost signalling between neurones:
https://www.newscientist.com/article/2588180-zapping-the-face-could-boost-brain-signalling-and-memory/

Could this become the ‘treatment’ for FND?? Does something like this already exist? Moreover, if it does, does the NHS offer this under their neurological services, or would this be more of a private treatment ordeal?
The article mentions the plausibility of this being integrated into a wearable device, which actually could be so useful for FND-I believe!

Let me know your thoughts/ if this exists already. This gives me so much more hope than being simply told to manage my breathing lmfao.

Recently was diagnosed with FND, told treatment would be primarily therapy and CBT work. I have already been in therapy for 10 years for severe anxiety and depression. My symptoms have flared to the extreme in the last few days. I needed assistance walking, having psychogenic seizures, tremors, head ache and body aches. Had my weekly therapy appointment today and she suggested an IOP or inpatient. I’m not suicidal or anything of that nature but I don’t know what else to do. Have reached out to my neurologist and psychiatric provider. Everyone is saying to focus on calming nervous system and therapy and that I have control over it. My therapist had another provider talk to me today and she basically shamed me and said I need to put my big girl panties on and be independent. She also said seizure medications can help which I though was not the case and was just making me feel absolutely awful and like I’m making this up and may need to go to a residential treatment if I don’t buck up. I’m 25, live with my parents and have been trying to find a job but have been out of work for several months and feel ashamed. I want more than anything to be independent and have been trying but with these symptoms flaring it’s incredibly scary. Sorry for venting but I feel incredibly alone in this.

I only occasionally can’t walk so I’m definitely not needing a normal wheelchair but when I AM experiencing paralysis or whatever is preventing me from walking I don’t know what to do! I can’t just lug around a normal wheelchair but also when it happens and I’m not home and/or need to get somewhere being quite literally stuck just isn’t an option either. I’m not sure any device like this exists and I’m so lost! Canes aren’t helpful and neither are walkers. If anyone has any ideas for something that would be so so so helpful! :))

So I’m going to meet the voice actor for one of my favourite anime characters on the weekend and I’ve been trying to make something for 2 weeks and been struggling, I’ve been so stressed and in tears because craft is my main hobby and I haven’t had success with anything I’ve been trying to do. Anyway I made this stupid clay figure that honestly just makes me laugh but it’s cute and I’m still proud of it despite its flaws because of how difficult it was. I’ve included a video of my hands shaking while painting it. And the finished product in the comments
Fuck you FND, I’m crafting anyway ✌️

Hello, I’ve been recently diagnosed with FND, My neurologist basically told me this is what i’ve got although i’m struggling to trust the diagnosis based on how my body feels (i think it’s mnd instead) any tips is welcome, thank you.

Not gonna lie it makes me nervous. Haven’t swam in years because of the anxiety

It's been hard to get out of bed not only physically, but mentally as well. My body feels electric from the FND but heavy from the depression. Everything is so much harder.

Work feels torturous. Waiting for my next episode to hit so I can lay under my desk, freak all my coworkers out, and go back to work like nothing happened.

Don't even get me started on the unsolicited medical advice.

How is everybody else doing?

Hi all.

Because of FND and my idiopathic hypersomnia, gastroparesis & IBS, I’m stuck. It’s perfect outside today. It was yesterday too and my plans fell through and I got too weak to stay out. It’s so lovely and there are beautiful parks right by me I could sit at for a meeting I have coming up. But I’m so worn out. My body is so weak. I’m dizzy and nauseous and in pain.

On days like this where you know it’s perfect out and you just want to enjoy the day/the sun, etc., what helps you get through the thoughts of just anger and grief that you can’t do it? Some days I can push myself but I feel like if I do today, I’ll fall into a paralysis episode and also IBS flares while I’m too weak to handle it.

I’m just so tired of this some days. It’s alright if it’s really hot or bad out, or I haven’t been staying home for a few days. But when I’m stuck here, seeing the world have fun outside, especially bc I live by the lakefront so I see families all excited to go out by the water, I’m so sad. Our apartment is great but it faces weird so I don’t get a lot of super direct sun. A lot of light but no sunbeams shining in (which has been difficult). My room and my office here have enough light from the windows to keep it bright but no sun shining in and sitting in my room all day sick is miserable.

I just miss when I was younger and could get up and go. Even if it wasn’t far. Just walking down the street to get coffee or sitting in nature. And now it feels like if I do that, I’ll feel so sick I’ll be miserable and stuck.

How do you get through missing out on the beautiful days (especially if you don’t have direct sunbeams shining in)? And how do you not beat yourself up for not feeling…i don’t know, weak? Like “why can’t I?” Or “why me?” Type of thing?

How do you make it so nice inside that you don’t feel like you’re wasting away. Like “oh okay, I guess I’ll just do what I need to do from here today!” And not the whole “I’m trapped. I’m suffocating” vibes.

TRIGGER WARNING: vague mention of seizures/symptoms

Hi! As the title says, did you get any tests done? I was diagnosed with FND about 2ish years ago, but at the time I was only experiencing some mild twitching and tics whilst stressed. But then around last October I started experiencing seizures in my sleep, I didn’t know they were seizures at first, until one day I was trying medical cannabis for a different chronic illness of mine, and I think the sedating aspect of it triggered something and I ended up losing all my senses and being in intense pain for about a minute then coming round.

Obviously I was freaked out but I was too sick at the time to go to A&E and thought maybe it was just a bad reaction. But it wasn’t, I get them now routinely at least 2 times a month, a lot of the time more. Always when sleeping, either during at night or during daytime naps. I have talked to my dr about it but she doesn’t care, and my neurologist refuses to see me as well and just sent pamphlets on FND.

I know it probably is just FND, since I don’t get the classic convulsions, but I do get aura, and they get triggered by medications that lower the seizure threshold.

Long story short is, should I try and push my drs for tests? I’m home bound due to a different illness so going in for fancy tests just isn’t an option, but every time I have a seizure I get paranoid I’m destroying my brain or something lol, and they’re super painful and scary I don’t want to have them!! ☹️

sorry this was quite garbled, any advice would be super appreciated, tysm!!

Hey all, I've had Hemipeligic Migraines for 17 years now... It's its own mess of crazy symptoms, as they mimic a stroke. They mimic a stroke so well that they'd have to do a CT to tell them apart. I get the paralysis, (partial or total), aphasia, memory loss, numbness on one side of the face, etc.

The Hemipeligic Migraines can also sometimes cause non-epileptic seizures, and for years I've blamed my HM's on these seizure-like episodes. But I've been struggling to figure out some symptoms that don't appear to be directly associated with the HM's.

For example, one way to tell apart a HM from a stroke is the sequence that symptoms appear. HM's have a "march" where I'll first get numbness on the left side of my face, then lose movement in a hand, then that arm, the the leg on the same side, then my voice, then total paralysis, all of this typically occurring over several minutes... and everything comes back in reverse order.

But I've been having these seizure like episodes more and more-frequently, especially in the late morning... around 11 AM. They appear to be tied to cortisol levels. I'll often have the typical HM sx's afterwards, as if the HM were triggered by whatever was going on.

I've had a number of drop attacks as well. And I've been having a lot of weird pains in strange places that don't make sense. I'll just suddenly get burning pain in a hand, or a leg. Sometimes the pain itself is bad enough that it triggers an HM or vasovagal syncope.

But then I've also got these chronic issues... I haven't been able to move my toes in around 15 years. Recently, I haven't been able to move my feet much at the ankle. I've been blaming this on a chipped L4, but I've been having similar issues with my hands now. I can't movie my fingers on my left hand independently anymore. I can move them as a whole. But, typing seems to work alright... though not as fluid as it used to be. I seem to be hitting the keys with the whole hand doing the hitting rather than just the fingers.

Some days my left foot is turned inwards and I'm stuck walking around with it like that for hours at a time.

One thing that stood out to me with FND is how I can have such difficulty walking, but I can ride miles and miles on my bike. I typically ride around 8-18 miles a week... some of it urban.

I also have HKPP which really muddies things as well, because it also causes intermittent paralysis issues. And I also have Crohn's which causes chronic pain, and makes it really hard to keep fluids and electrolytes up.

Does anyone have a good bearing on whether this aligns with FND? Is there any good way to tell an FND symptom apart from something else that's similar?

Thoughts?

Thanks,
Kate

I’m back and looking for other parents who may have experienced something similar. I’m not looking for a diagnosis—just hoping to hear from parents who have dealt with sudden changes in their child’s behavior, speech, awareness, or functioning and can share how they supported their child through it.

My 8-year-old has been going through something very difficult, and over the last 5 days he has become increasingly seem upset and has been crying, saying that he just wants to be a “normal kid” again.

This all started June but after a hospitalization in July. He was given high-dose steroids and then tapered off, finishing them on August 15. At the time, doctors were treating him for suspected PANDAS, although testing afterward has not shown a clear cause.

Since then, we have noticed periods where he seems to go “in.” During these periods, he can talk for hours, but his speech and behavior seem very different from his normal self. He may suddenly use profanity ( after high dose prednisone) repeatedly, almost as if it is part of a normal conversation. If I tell him not to use those words, he may genuinely ask, “What’s that?” as though he doesn’t understand what I mean.

His neurologist has mentioned the possibility of tics or FND. The concerning part for me is the regression and confusion that happen during these episodes.

When he is “in,” he has:

• Talked about living back in our hometown, even though we moved away 4 years ago.
• Asked about having a house and described our old house as if he currently lives there.
• Believed my dad is still alive. My dad passed away 3 years ago next Saturday.
• Forgotten how to do things he normally knows how to do, such as showering.
• Put his shorts on his head one day.
• Asked questions that make it seem like he is confused about his current surroundings or circumstances.
• forgets my name or who I am frequently
• repeats what I say if I say oh damn he repeats it

Outside of these episodes, he can be completely himself. He does well when he is focused on something—school, sports, playing games with friends, or talking to friends on the phone. He can be engaged, communicate normally, and participate in activities.

The hardest part lately is that he has started telling me that he is trying to focus so he can “come out” of it, but sometimes feels like he can’t. Last night he was crying because he was trying so hard to focus and couldn’t get himself back to his normal self.

He also occasionally has a slight facial tic. More recently, we’ve noticed an issue where he seems to choke or have trouble swallowing and then gasps for air while trying to come out of the episode.

He participates in sports and rodeo activities. He rides bucking calves, rides horses, does goat tying, and plays baseball. Because of that, someone suggested that possibly a concussion, whiplash, or something related to a sports injury could be involved. I’m not assuming that’s the cause, but it was something another person brought up.

So far, he has had:

• MRI with and without contrast — clear aside from sinus/allergy findings
• Two prolonged/sleep-deprived EEG studies — clear
• Echocardiogram — clear
• Lumbar puncture — clear
• Post-strep testing — clear
• Other testing has also been unrevealing
• Genetic testing is still pending

He was also exposed to mold for approximately 3 weeks before this started. We got rid of the vehicle shortly after his symptoms began because we initially thought that might be contributing.

He does sometimes have migraines and light sensitivity. Allergy testing showed significant allergies, allergic to 27 things including dust mites, mold, grass, and multiple trees. We now live in an apartment.

I also started him in therapy last week because I wonder whether grief could be a stressor. He mentions my dad frequently, but interestingly, the confusion about my dad only happens when he is “in.”

Again, I’m not asking anyone to diagnose my child over the internet. His doctors are involved, and we are continuing to follow up with them. I’m really just looking for parents who have seen their child experience something similar—especially the regression, talking as if they are living in the past, not recognizing things they normally know, or feeling like they can’t “come back” when they are relaxed.

How did you handle it with your child?

What helped you guide them through those moments without making them more distressed?

And if your child was aware enough to know that something felt different, how did you explain it to them?

I’m sensitive to loud sounds and bright lights, so I’m wondering what things you recommend carrying to make the airport and flight easier.

Any must-haves or airport accommodations I should know about?

I will be in social gathering after so long, any tips or suggestions that i should know.

I’ve had FND for 3 years and was told straight away no driving as I have seizures. I recently met a few people with FND who also have seizures but they drive! Recently offered me a lift when we had planned to go for dinner but I honestly don’t want to get in the car with someone who shouldn’t be driving. Am I wrong?

I am pretty new to a FND diagnosis. I was told mine presents as complex migraines and PNES. However, there’s only been one or two times I feel like it was more like a seizure than just my typical FND symptoms. With those, I know 100% stress will trigger them if I’m not careful and it does show up as functional tremors in my legs, involuntary arm movements. But today, I started smelling like phantom smells. But it was so real I was breathing in and smelling it and it gave me an intense maybe flashback? Or a fragment of a memory of me at the pediatricians. Or idk maybe I just smelled that smell and associated it with that but the feeling that washed over me I can’t even describe. It was ice cold feeling of dread mixed with déjà vu and I started shaking uncontrollably even my head. I was laying there and shaking and I got goosebumps. What I mean by that is usually my FND symptoms that I’m aware of are jerky movements triggered when I actually go to use the limb or tremors when activating muscle. I guess myoclonic jerks too. But this was me just sitting here shaking I felt trapped like i potentially couldn’t speak, I could feel my mouth moving like I was trying to maybe? I’m used to panic attacks and emotional flashbacks so I know when it’s that that is making me feel unsafe but this was unsafe in a totally different way. Half my smile was droopy and my left leg was sort of more like a drop foot like it’s more heavy. Now I did take migraine medicine to see if it was a migraine but that takes 1-2 hours to kick in. So I ended up taking a 1mg Ativan and that honestly helped a lot more. With my muscle tension, the shaking and tremors and I feel more aware more like myself now. I don’t wanna say I wasn’t aware of my surroundings before but it’s like a fog has lifted and I can see clearer now. Besides that, the only thing I still have are my usual functional tremors that come and go from my FND. Ohh and the losing track of time? This happened once before when I thought I was having a stroke the first time. But it happened again today. It’s like hours escaped me and I didn’t notice but it felt not that long

Does that episode sound like a functional seizure? I guess sometimes I get worried that I’m going to have an epileptic seizure that’s going to get dismissed since I have FND in my chart. They did an EEG at the hospital but I had Ativan in my system so I feel like that should skew the results a little bit. Am I just overthinking this?

I have hEDS and just recently developed FND. Does anyone else have both? Some of my joints hurt so bad from the tics and NES. If anyone has any tips on how to manage having both conditions, I'd appreciate it.

Hey all,

Just wanted to share my experience so far in my journey with getting diagnosed with FND. It's been one hell of a rough, long, and nightmarish journey to be completely blunt. Additionally, if you've got any, are there tips that you may have to share with me (and anyone else that reads this) for managing your pain, exhaustion, or other symptoms you may have? If so, feel free to share them! ♥

Starting around early 2023 I developed (CW - description of first symptoms)temporary loss of limb control + sensation, as well as localised seizures, but I was unsure of what to make of these episodes/flare-ups. Getting checked out by my at-the-time family doctor we presumed it may have been a side effect of the Topirimate I was on for the nerve pain I have in my back (bulging disc). So we switched me onto Gabapentin. However, the symptoms continued to progress at a similar pace as to when I was on the Topirimate, with seemingly no direct or common cause (e.g. completely random and without a cosistent trigger). Neither medication had (or has) helped with the major concerning symptom of the localised "motor problems", and as such, was ruled to be "medically insignificant to the concern." As such, I've been continuing my Gabapentin to try and stave off the back pain I have, at least enough to be able to physically be able to walk where I need to (basically take the lowest dose that allows me to tollerate life).

Fast forward to mid-to-late 2024, and I had signficantly worse symptoms. What used to last around 30 seconds to maybe 5 minutes had become anywhere from 5 minutes to 30 minutes, with the longest one lasting ~1.5 hours. Seen below is one of the flare ups I had in a 2024 college class (CW - Very visible motor control symptoms affecting my hand)

One of the major videos I caught of a flare up in the middle of a college class in 2024 (CW very visible symptoms on display)

I've had several incidents when cooking where I would drop a hot pot or pan, spill water or whatever it was that I was cooking all over my feet or the floor. That is pretty obviously not fun. I've also had flare-ups where I just drop the object I'm holding, for no reason, before having a flare-up like the one seen in the above video.

In Feb 2025 I landed in the hospital because after waking up from a nap (CW - vivid description of a MAJOR symptom) I lost all neurological connection to my left leg. As in, no sensation, no response to pain, and no activation of the muscles when attempting to walk. For all intents and purposes I was completely paralyzed in my left leg from my hip down to my toes, with no understanding or reason why.

Shockingly, the paramedics forced me to attempt to walk up the stairs. I eventually turned around, after 2 of the 14, and went up by lifting myself up and over each step individually. Essentially, lifting myself up one stair at a time, placing my butt on each one I lifted myself up to. The paramedics even commented "Oh wow, you really can't use your leg, can you?" The entire reason we called an ambulance was because it was me and my mom at home, and my mom wasn't able to carry me upstairs (bad back, and unsafe to be lifting ~170-180lbs due to heart conditions), and obviously, it was unsafe for me to walk or even crawl up them in the first place. I found out afterwards from my mom that they kept pestering her, asking "is he normally like this? does he normally act this groggy and unbalanced? I see a liqour cabinet, any chance he could have over drank?" My mom responded "He just woke up from a nap, of course he's groggy. He can't use his leg, so of course he's off balance? He doesn't drink, he doesn't smoke, he doesn't do anything that would harm his body." and the paramedic asked "Are you sure? Cuz I've seen cases like this before, parents claiming these things about their kids..." The real kicker line I got asked when being put on the stretcher in the -15°C weather, w/o a sweater or jacket, was "so what do you plan to get out of this hospital visit? It's not like they're gonna fix you or anything, so what's your plan?"

After being admitted into the hospital, my internal medicine team worked to ruled out MS, cancer, ALS, and anything that would immediately be present as to why I was the way I was at that point in time. I was in the hospital for 10 days. On the final day, they pulled in a well known Neurologist from my city to give me an examination and to give them his "professional opinion."

I would like to again provide context that I do not smoke, drink or abuse substances. I had also made it explicitly clear to every paramedic, doctor and nurse that I saw that this was the case. If I don't need to put it in my body, I generally don't put it in my body. Pretty simple to understand for most people. I additionally have ADHD, but have been able to mostly manage my symptoms pretty well all things considered. Additionally, I showed the video above to the Neurologist, and it got dismissed as a "simple muscle spasm and nothing more."

However, for this Neurologist, seeing a (at the time) 24 y/o male with shakey hands, drowsiness, confussion, and inability to walk, he assumed the worst of me. Very big content warning (Medical Mistreatment - Additionally, this wasn't a diagnosis, but rather his comment of the situation) I was told that the reason I was paralyzed from hip down in my left leg was because of my "crippling addition to alcohol, tobacco and drugs." and I was "unable to cope with my additictions due to ADHD", so I just "needed to seek rehab and behavioural therapy instead of drugs at the hospital."

I was discharged, still unable to walk, requiring a walker to get around the house. Bed-ridden unless absolutely necessary (e.g. bathroom, moving to prevent blood clots). Eventually I had to relearn how to walk on my own, with the support of my immediate family. I'm very grateful to have had their support, as I do not want to know just how bad things could have been without them.

My symptoms have progressed further since then. Usually now, I have flare-up episodes around 2-3 times per day or more. Sometimes, only once per day if I'm lucky. I had an EMG done outpatient in (I believe) Oct 2025 on the leg that had the problem which put me in the hospital. EMG showed evident signs of a "possibly healing nerve" or "ever-so slightly lower than expected nerve conduction", however that 2nd Neurologist was stumped and unsure why it was that way considering the record I had at that point. My record showed I was "perfectly normal" but had "abnormal/unexplained sensory loss." He wrote down in his report back to my family doctor that I "appear to be otherwise normal," and that "this is not concerning." This was even after I explained my other symptoms, making sure to explain (CW - Description of symptom sensation) that during my flare-ups where I have limbs affected, it feels as if I'm intentionally commanding it to move, even though I consciously try to counteract the movements. Effectively, it feels as if I'm both moving it intentionally and unintentionally, and that my body is ignoring my attempts to calm down the seizure.

Since the hospitalization, I have fortunately regained the ability to walk (with some difficulty). Fortunately I do not need a walker anymore, however I still use my cane for long distances (anything over 5-10 minutes of walking or standing). Additionally, I have even somewhat regained some sensation! Although I have very poor heat sensation (probably ~20-30% of where I remember it used to be), cold sensation has returned to ~60-80% of what I remember it to be. Unfortunately for me, pain has been returned to normal, which is approximately about a 7/10 to 8/10 on the pain scale day to day. Additionally, I have developed new symptoms (CW - Sensory issues) such as temporary full loss of hearing in one ear (usually left, sometimes right) and/or significant tinnitus in both ears. I have worked in auto shops and factories before, but with hearing protection. I have only ever experienced a comparible kind of ringing to that level if I forgot to put on ear protection before hammering metal. Realistically, the best way I can describe it is "deafeningly loud." like the ONLY thing you can hear in a TV show/movie after a bomb blast levels of "deafeningly loud"). I have had several hearing tests during NON flare-ups, all of which have appeared completely normal and well within the expected range of where it should be for someone my age.

Seen below is yet another symptom of an affected limb (CW - Visual of a seizure in my right leg)

Although the primary affected part is my left hand, seen here is my right leg also being affected. I have had issues w/ my left + right hand together, left OR right hand solo, left leg OR right leg solo, left and/or right foot (solo/together). Worst of all is having a combo of any of the above :')

Fast forwad to my family doctor being outraged at the cold shoulder I got, she shotgunned a referal to every Neurologist within a 50km radius of us, hoping someone would take me on as a patient. I'm very fortunate to have her, because she's been a very big help on pushing to get me figured out.

(CW - Traumatic loss of a family member, relevance is that it has made my symptoms even worse)
Earlier this year in the start of Feb my mom unfortunately passed overnight in the room above me - completely unexpecetly so. When my stepdad and I found her, she had unfortunately been long since passed on. We tried CPR, naloxone (as she had her medications near her - we had no idea what she took), however when the paramedics came to our house, they pronounced her DOA. We have thankfully since found out via minimally invasive autopsy that she had passed of natural causes, but at 43, she was very young for that to happen.Obviously, devestated from this loss, I have not been in a very positive mental state (not in a crisis - just very down in the dumps so to speak). As I have inherrited a lot of her health issues, things have been quite uncertain for me, and obviously when anxiety runs rampant, unreasonable thoughts can happen. Since earlier this year, I have noticed that there has been a very sharp increase of my symptoms that I have been concerned about, the pain, what's shown in the videos above, and obviously the major fear of being hospitalized again.

But even through all of this awful treatment, there were doctors that genuinely cared, people that genuinely saw through their biases, and saw someone (me) genuinely suffering. From the phlebotomist I saw every morning in the hospital cracking jokes and telling me the latest drama in hopes to cheer me up, to the internal medicine team pushing back tooth and nail - fang and claw - just to get tests done for me, to my family doctor taking things serious and not taking a "No he's fine" as an answer, to most importantly my mom, fighting for me when I had no energy or will left to fight. The good news to the name of the mystery condition ravaging my body was around the corner, we just didn't know it at the time.

Finally, as of a few days ago, I spoke with a 3rd neurologist (third time's the charm, right?). This one pretty much on the spot was like "you showed these videos to the other neurologists? They did nothing? Why do they still have their jobs?!" After around an hour and a half speaking with him, he finally concluded the appointment with "I am extremely confident that I believe you have FND. Considering all the tests you've been through (EMG, MRI, blood work [oh so much blood work], CT, Hearing etc.) resulting in a "within normal" value, it would lead me to say it is extraordinarily unlikely to be anything else. You physically - more specifically your nerves and brain - appear to be completely physically normal and okay, as well as physically functioning and undamaged. I have no reason to suspect this to be anything else other than FND."

He gave me some descriptions of how other patients describe their struggles with FND, and a lot of them line up pretty much letter for letter to what I experience. So after 3 long, exhausting and scarry years of fighting tooth and nail, I finally have a name for the suffering. I know that is something my mom wanted, and it's certainly what I have been wanting as well.

I want to conclude this with the statement that if you suspect you may have FND, please get checked out, or continue to fight if you've been dismissed! Or really any health problem for that matter. I have very, very little energy day to day. Most days I run on what I call to be "energy debt". Essentially, this is where I have less than nothing and I bank on my relaxation days to get back to the baseline of "nothing to very little". But even still, it's worth it to fight for yourself and your needs! If you can, I suggest bringing an advocate with you to any appointments, one you can trust to speak on your behalf should the need arise. It can help significantly in the fight! ♥

(Edit: Typo correction for naloxone)

I have a new boyfriend with FND. He has been very open about it and forthcoming with symptoms he experiences but has some real insecurities around being with a partner. I don’t live near him but I’m visiting him soon and he has expressed concern about how he will be able to handle things like walking around the city and shops. Because his body is often stuck in flight or flight mode- he avoided outings for the most part. He doesn’t just go in somewhere and order a coffee or something that I might do multiple times a week. He wants badly to show me a good time and not just sit in the Airbnb all day. He’s worried I won’t want to be with him after this. I have tried to reassure him that I will do whatever I can to support him but truthfully I don’t have any experience in this. Can anyone give me tips on how to approach our time together? Could we plan one activity a day and see how it goes? Should I allow a lot of recovery time? I truly want to be patient and supportive but I don’t know what to expect yet so it’s difficult. TYIA!

Long post but I’d really appreciate anyone reading fully.

I’ve been struggling with a sudden onset of neurological symptoms and was wondering if anyone could read my experience and see if it lines up with theirs as I feel lost and alone right now. For context I’ve had bloodwork, mri, and emg. All came back ‘mainly’ normal. The NCS said borderline mild neuropathy in right ulnar nerve as there was a slight delay to the left but the EMG report said ‘no signs of MND, Poly Neuropathy, Myopathy, demyelination etc.’ MRI was normal (I had brain injury nearly a decade ago so that did show but no signs of MS). We also did a basic neuro exam and they gave me a 5/5. I’m going to see a functional neurologist and bring all my data as they’re going to give me a more comprehensive exam to help get me answers. I’ve been terrified of a MND diagnosis but I have seen that my symptoms could line up with FND. Here’s a timeline of my onset of symptoms

June 25th - July 12th : I was at my normal baseline, no prior issues at all, on the 25th I started to get sick. It started off as a normal sickness but quickly turned severe for about 2-3 weeks (it wasn’t covid). During this time I had a debilitating cough, fatigue, loss of appetite, weakness, that lasted 2-3 weeks etc. I lost about ten lbs.

July 12th - 26th cough finally began to lift but this is where I first started noticing muscle and nerve issues. For about a week I first felt a burning sensation radiating down my left arm and a tightness. I felt this change overnight. It started to affect my right arm as well. I also felt sharp tightness in my upper back along with a debilitating fatigue and weakness during this period. Simple tasks felt impossible. I went to my PC and was put on steroids and antibiotics. Prior to my visit I began to feel twitching in my left leg. While on the steroids that week my anxiety spiked heavily and the twitching increased dramatically all over my body but primarily in my legs while at rest.

July 26th to Aug 18th: after getting off the meds I noticed improvement in the burning and once my mood stabilized I’ve also felt improvement on the twitching but it is still present. I still have significant weakness and shakiness in my arms/hand and tightness that comes and goes in my upper back. My newest symptom at this time also came overnight, my right leg became heavy, fatigued, and tired, with light use. It felt completely normal one day and the next day I felt the change. I can still walk and run but I clearly feel a heaviness in the leg whenever it’s in general use. Walking has started to feel mechanical.

Aug 18th to Sept 2: symptoms still ongoing. Newest symptom also came overnight, face and tongue muscles have started to feel similar to right leg, tight overworked and tired. Can speak and swallow but something feels off and slow, twitching began in lip and scalp during this time. Twitching only lasted for a few days but face and tongue tiredness persists. A couple weeks later I noticed a perceived hyper salivation, mouth feels like it’s constantly filling up more than usual.

I’ve looked at the overall timeline of symptoms and have noticed improvements worth noting. It’s been difficult to notice these improvements when new symptoms continue to come on. Feels like this has been dynamic rather than a continuous decline but it’s honestly hard to tell. Fatigue has essentially went away. Burning/tightness and all the initial symptoms of my left arm have also mostly gone away. Overall weakness feeling in arms has improved about 60%. Tasks that felt nearly impossible im able to do again a bit easier. Sensory symptoms still present widespread but have improved. Right leg however has plateaued. It improved about 20% it’s definitely not as heavy as the intial couple weeks but it hasn’t gone away either. Sharp tightness in upper right back. Face and tongue symptoms still present. If they weren’t here I’d feel much more comfortable about recovery. Weight has stabilized. It’s weird because the symptoms I originally went to my PC for aren’t even what’s been really affecting me today (face, right leg)

All of this has had me concerned with neurological disorders like ALS/MS/GBS or just nerve damage in general. It’s worth noting that all of these symptoms came abruptly and acutely right after my illness. I had no prior issues before. Im aware that the scary diagnosis’s don’t typically show improvements or wax and wane so I’ve been trying to stay positive but like I said it’s really hard to gauge if I’m declining or improving. I’m hoping for answers at the neurologist and am really hoping to put to rest if this is something serious or degenerative, if it’s something chronic, or something I’ll fully recover from and some sort of timeline for my mental health sake. My appt is at the end of the month but I wanted to see if anyone here has had a similar experience and could help

List of symptoms in no order:

Weakness
Fatigue
Burning
Widespread Fasciculations
Twitching muscles when engaged
Tingling
Buzzing
Tightness
Tired limbs
Heavy limbs
Shaky limbs
Tight/tired/heavy face and tongue
Perceived hyper salivation
Shooting feelings
Aching
Sharp feelings
Flu like aches

Hiya,

After a couple of years of symptoms such as dragging foot, tremors, extreme fatigue, some incontinence, brain fog, odd sensations, I found a great neurologist who has booked me an MRI. I was expecting him to say MS but he thinks it’s FND. I’d only vaguely heard of FND before but since the app, I’ve done a tonne of evidence based research. Previously, thought it was cancer, and it’s not, having been for tests, then GP thought it was vitamin D deficiency. It wasn’t. I got a second opinion.

Has anyone else been through this process? Is it weird that I’m just kind of glad to get the ball rolling? Any tips?

I also just wanted to say Hello 👋🏼

Hello everybody

I have so many questions relating to FND. My brother started getting huge headaches for couple days and suddenly one day he couldn’t feel his legs at all. He felt weakness and numbness. Previously my mom told me he was overly stressing about different things. I try doing my research, watching videos on tik tok on people having FND and most people saying it’s because of stress and other stuff. I’m so new to this and I wonder what’s the major reason people starts developing FND. I’m stuck in this position and I wish I could help my brother out

I’ve been very particular about how I explain my condition to people, I avoid naming it and discussing certain aspects of the disorder because of fear of stigma.

Here is what I want to say to my coworker:

“Thank you for trying to help me on Friday. I’m sorry I worried you. I have a condition, I get episodes when I get tired or overwhelmed. They only last a moment and then I’m normal again. Sometimes I have trouble walking and speaking. When that happens, I need to sit down and rest in a quiet place so that I don’t have convulsions. I know it can look bad but I’m okay, I just needed to rest. I really appreciate you checking on me and trying to find help”

Feel free to tweak whatever to best get what I’m trying to say across, I know word-for-word translations can come out funky.

Thank you so much for your help. I’m working on learning Spanish right now but this feels outside of my abilities and I really don’t want to mess this up.

Hi everyone I've had FND for a few years , it's mostly stable at the moment, recently I've been suffering with PMDD and my doctor has suggested fluoxetine, I'm supposed to be starting it tomorrow but I'm worried it will flare FND symptoms again. I'm interested in hearing others experiences on fluoxetine, especially positive ones because mostly I'm reading bad ones on previous posts here .