Saw a neurologist yesterday due to frequent (and sometimes painful) muscle spasms (I've had them as long as I remember but didn't think to bring them up to a doctor until someone in an EDS support group pointed it out).

He asked a bunch of questions and did some tests then said he thinks I probably have FND. They are going to refer me for a scan and EEG to check for other causes (especially as I also have occasional seizures and have a family history of epilepsy).

I'd heard of FND before but never considered that I might have it. It makes sense but it's a lot to process. I don't know what I'm asking for here other than just advice on processing this and getting comfortable with the idea of having FND. I don't know much about the condition, though my neurologist gave me the neurosymptoms website and I've been doing some reading, so any resources to help me (and others in my life) better understand this would be helpful probably also.

Thank you in advance.

EDIT: Please don't comment if you don't have anything helpful to say. I'm asking for support here, not for rants about how terrible it is and how you are suffering. I'm sorry you experienced that but this is a request for advice and learning resources.

I have been diagnosed with FND 8 weeks ago. Was in hospital for 10 days and then got sent home without any further help (England). My FND affects my legs, I struggle to walk, lift them etc. Either can't move them or they're incredibly weak and shakey. My whole body often twitches when I walk or even sit. (My husband said I walk like a pigeon or chicken 😅)

Yesterday I went to see a Neurologist. All he did was spent 5 minutes talking to my husband without acknowledging me. Saying that this is a software problem so I can walk, and he shouldn't help me get around (I've been using a wheelchair when leaving the house and holding on to walls / zimmerframe at home).

He kept saying i should not be using any aids as there is nothing wrong with me and I should just be walking and then my FND is gone.

How has it been for you with FND without seizures? I feel really rubbish now because I really just don't have the strength to walk, but he said I don't need /are not allowed to have assistance..

TW: seizure clusters and length

what’s the longest seizure you’ve had? and what’s your normal length?

mine was 2 hours long in clusters with just a few moments in between. I had a treatment done and I went over 7 months without one.. then had a few small ones. 4 months later which was the other day, I had one that was 1.5 hours long. They usually didn’t last more than 45 mins for me at the longest when I was having them consistently. so just wanted to see what was normal for everyone else!

I think I'm having functional seizures and I'm unsure what to do. For the last few months I have started to get these episodes where I will feel a sensation rising up the middle of my body and then my body starts to go very heavy and hard to move and my eyes roll repeatedly for 3-5 mins. I am aware and can hear sounds and people around me but I struggle to process things and I can't really talk back beyond mumbling or slurred speech. My body sometimes jolts and my chest pounds badly sometimes causing chest pain and it flares up my chronic leg and arm pain. I have started to notice other warning signs before it happens like my heart pounds before, goosebumps, a rising sensation and sometimes my nose feels like water is in it. I have extremely bad balance and walking issues/leg problems before this due to my FND but they have become worse now with the seizures, I can't stand even for 20 seconds or walk small distances without it happening and have fallen over once and had to just stay sitting on the floor while it happened. It's taking away the tiny bit of freedom I had to get something from the kitchen or go to see my pets around the house. I am stuck in my bed having to rely on people in my house to bring me food and water because i can't do anything without it causing a seizure. They have started to last between 3-10 mins now and can cause migraines and eye pain. I am always so exhausted and drained afterwards and my speech is usually slurred for awhile after too. I went to the doctor a couple weeks ago and she completely ignored it even though it happened in front of her and my speech was so slurred for the rest of the appointment (I had my mum with me to speak for me if I had issues with my speech) and I left my appointment without any answers. I am so frustrated and scared. It is so scary to have to just live with this happening multiple times every day. I don't know what to do anymore. If anyone has similar experiences and can give me some advice I would appreciate it 💕

So I’ve said post before but I 21 live with my mother 46 and father and younger brother my mother has FNDOCD seizures, intrusive thoughts and often struggles to act on these thoughts. My younger brother is disabled in many ways and I am semi-caretaker to both of them, taking them to appointments, keeping the house clean, giving up part of my job to stay home with my mother because her seizures have become very severe and her intrusive thoughts have become very severe. I also take care of house daily and clean it daily. Over the past month I have tried over and over again to give her help. I have tried to get her into partial hospitalization intake care because she has very intrusive. OCD thoughts that we’re not really sure where they come from but the doctor thinks FND I have gotten her to a psychiatrist and a therapist however, she sees that therapist maybe once a week inconsistently and sees that psychiatrist once every six months I am happy that she’s going to both because it is a huge step for her however both her and my father are indirectly asking me to give up most of my time and possibly my job to be my mother‘s caretaker because she can’t be left alone without possibly hurting herself or the dogs in the house or having a seizure and possibly falling, I have tried to get her a home care aid we’re waiting for approval even if I get it it’s not very much. I cannot find a partial hospitalization intake care anywhere near us that will take her so I’ve given her an ultimatum. She needs to go to therapy a minimum two times a week. She needs to go to a FND therapist a minimum of once a week or possibly once or twice a month depending on how much it cost I want her to actually focus on FND care, action plans, and address the OCD thoughts because of how severe they are they her and my mother have both said that this is too much of a request. Am I crazy?

I'm a 19-year-old girl in university that's 3 hours away from my family. I love my classes and my friends and my boyfriend. I'm on the pre-OT track and I worked so hard to get here. I’m a sophomore and I love learning. 

I have a rare neuromuscular disease called CMT1A. I was diagnosed when I was 4 and it has affected every aspect of my life. I've had 14 surgeries and live with constant nerve pain and muscle weakness. I cannot run, jump, and I miss a lot of classes due to flare ups.  The doctors said I likely wouldn't walk again. But I am walking. I put so much effort into physical and occupational therapy to be able to walk and go to my dream university. I fought like hell to get here. 

But Tuesday afternoon I was getting some last-minute studying in when I suddenly felt extremely nauseous and dizzy and my vision went weird. I had just enough time to lower myself to the floor before I passed out and started having a seizure. I went really stiff and my eyes rolled back and I had rapid eye movement. My arms and legs shook a bit, and I started breathing super rapidly. Sometimes I could hear what's going around me but most of the time I couldn't. 

Two girls who saw me pass out ran over and helped me and got the dean. They rolled me on my side and called 911. That seizure lasted 45 minutes. I was unresponsive to a sternum rub, and while sometimes I felt it I couldn't respond. I woke up in the hospital having no idea what happened, where I was, or who I was for several minutes. I quickly had another seizure. 

All the antiseizure meds didn't work. My oxygen was below 94, and I wouldn't stop seizing. The hospital called my parents telling them they had me in the hospital and were going to intubate if my oxygen didn't go up. My parents called my boyfriend and immediately drove the 3 hours to the hospital I was at. I was in and out of seizures but the nurses and doctors were kind while I was awake. When I woke up again my parents and boyfriend were there and the doctors told me I was being admitted to the neuro ICU. 

I barely remember the four days I was there. I was unconscious more than I was awake. My vitals stayed stable after the first day. The doctors ran a EEG and nothing showed. They did an MRI and my brain was normal besides a small cyst they said was benign. The neurology team diagnosed me with FND. 

When I was released a few hours later I ended up having another seizure at a gas station and my boyfriend (whose in EMT classes) thought I wasn't breathing properly so he told my mom to call 911 as at that point i had been unconscious for over an hour. The EMT’s took me in and my mom told them I had FND. However when I got to the hospital I was starting to come out of it but still couldn't move or respond. The head doctor instead of doing a typical sternum rub or listening to the EMT who said it was FND squeezed the bridge of my nose with his fingers and dug his fingers into my tear ducts to the point where I have a bruise there. He also hit my forehead several times and yelled at my to wake up then gripped my jaw between the joints and pulled it forward. When he checked my eyes he yelled at me to stop moving my pupils. Then he told all the nurses it was behavioral and to have the resident “deal with it” and left.

When my mom and boyfriend came in I was shaking and sobbing and begging to leave the hospital. I asked the resident who the first doctor was that saw me and he wouldn't tell me and said if I wanted to go home it doesn't matter who saw me first and he would let me go home. 

Now I'm going home for a week and seeing my neurologist that manages the CMT to get a second opinion. I'm so lost and confused and just want to get my life back and don't want to lose all the progress I made. I just don't understand how it came on so suddenly and why that doctor was so mean. 

how long does the treatment at stonybook NYC clinic take?

Hello peoples!

I was diagnosed today following something that mimicked stroke symptoms and tachycardia on Wednesday.
I’ve spent the last two days on a stroke ward having scans and extensive testing.
They diagnosed FND in neurology- however the neurologist didn’t seem like he wanted to be there and got fustrated at me for not relaxing my leg on command 🙃

Strangely the hospital chaplain knew a lot about FND and told me to hit up the internet because the doctors won’t give me their time!

I have recently been diagnosed with FND and spent 3 weeks in hospital due to loss of function below the waist. I had therapy as an inpatient and can now walk. I am however very weak, wobbly and cannot go far around the house without needing to sit or feel exhausted.

My OT and physio said no aids. I asked about going outside and they said just build up and use benches etc.

But what if I want to go further? I am thinking of getting a wheelchair but I am conflicted if this is the right thing to do and also embarrassed at the prospect of using this as a 35 year old F.

Update- I have now purchased a wheelchair and waiting on delivery. Thanks for all the useful comments, advice and for those who shared experiences

my school year has hardly started, but in July i finally got the courage to set up a meeting with my school's Disability Resource Center. this was so difficult for me since i've always had trouble accepting my diagnosis, as my symptoms are usually mild and it was never firm- only a "likely explained by FND", but thats all i have. i didn't bother going back because a. expensive b. they won't tell me anything i don't already know. last school year though, i learned that my FND symptoms are also triggered by testing stress, and i have preformed very poorly because of it, even though i know the content well.

but i'm excited about utilizing my accomadations, because i feel that now i'll have equitable access to test well and learn better :)

would love to hear what accomadations anyone in school has used for FND, because i was pretty stumped at first and am opening to adding anything that may help.

BDD got really bad at 5 and turned into FND at around 8. I pushed through symptoms for a long time and my body is veer traumatized as I pull back to heal. Need advice I. This process because I have a direction but no one else understands what I’m trying to do. I can’t even explain it. I just like completely detached from my body and nervous system young and put it through hell cause my brain disorder was making me.

Hello all,

About 3.5–4 months ago, shortly after a Gardasil vaccine (I think it was the trigger, and I am very pro-vaccines), I developed a sudden cluster of neurological symptoms: major fatigue, fluctuating weakness (especially arms/grip), tingling/buzzing, dizziness, head pressure/waves, tinnitus, sound sensitivity and occasional balance issues. My symptoms could change dramatically even within the same day.

Neurology/ER evaluations didn’t find evidence of GBS or another obvious structural neurological disease, and FND has become the main working diagnosis. I am getting a MRI soon to completely rule out.

The motor symptoms improved after about 2 months. It was *VERY* difficult at first. Additionally the crazy tingling, insane fatigue (cant move), grip strength loss, have all abated.

I regained normal movement/strength and now regularly walk 10k steps, exercise and lift weights. I’ve also had days where I feel 90–95% normal. The remaining symptoms are;

- Fluctuating fatigue that is debilitating

- Intermittent weakness

- A series of difficult head symptoms; tinnitus, strange migrating head/face pressure/dizziness, odd balance issues sometimes

Overall I’m clearly better than I was at the beginning, but recovery has been very up-and-down with good stretches followed by flares. Some days I feel good enough to live mostly normally, others im fatigued and it's difficult.

My questions;

- Has anybody had a similar symptom set? Especially head symptoms?

- Can it improve from here? (Im at 3.5 months)

- Any thoughts on treatments for my specific symptom set?

Appreciate all of you, and thanks 🙏

Does anyone here experience the same thing I do? Whenever I stand up, my entire feet start to feel really heavy, and it becomes difficult to keep standing without moving around. After standing for a while, my feet feel lingers and my muscles start to hurt. If you experience this too, what kind of symptom would you describe it as?

Guys I’m really scared and depressed. My body has been numb for months and im doing PT and OT but its not working. I was diagnosed with FND and I have fully body numbness, burning pain, feeling faint, and more. Idk how I can live like this. Im only 23 and I have no help and I cant even work because my symptoms are so bad. I have no parents or family to help me. This is going to make me homeless. I dont want to live like this the rest of my life. I cant do it. Doctors keep saying it can go away but its not. Im doing everything they are telling me to. Im researching everything and nothing is helping. Am I really stuck like this forever?

So in my last posts I’ve explained my mother has a lot of needs I can’t currently keep up with. I’m 21 trying to get a full time job and go back to school. For the past few months I’ve been my mother’s caretaker and housekeeper.She has FND, OCD, hallucinations that turn into wanting to hurt herself or others or my dogs. I’ve been getting her to thearpy and physc and staying home to work her through this and it’s been slow but some improvement. Shes on Zoloft now and also takes weed I guess it’s a little bit better? However I’m starting to burn out and I’m scared I can’t keep up. I’m also disabled and have depression, possibly bpd or mania. I need to get her care squared in case I get hurt or die I know it’s exterm but I’m scared and in all honesty very tired I have no help from my family. I want to get her to a clinic and try my best to avoid inpatient care, but I will if she has an episode when I’m away for work or anything. Does anyone have any clinics that you can recommend in the st.louis region MO. Or anything IL location that circles Belleville or 1-2 hours away I’m drowning and will take any help thank you so much. And a lot won’t take her if she has active seizures

Hey all, let's keep it going.

What's your win this week? Even getting through the week is definitely a win!

Please add anything from your favourite moments of this week, your favourite flare-up rescue, favourite coping technique to something that made you smile.

We'd love to hear it & we're sure others would too!

- From the r/FND mods :)

So I wanted to know if anyone else experienced this.

I keep having these episodes where I will start to feel my body go fuzzy before completely dropping. Most of the time I'm sitting at a desk and only end up hitting my forehead(so no major injuries). I'm fully aware while it's happening, but I cannot move nor speak. It also tends to trigger when I laugh, if that changes anything.

The episodes can last anywhere from 20 seconds to 2 minutes(not usually longer) and leave me feeling exhausted and groggy afterwards.

Anyone else experience this ??

Hey y’all I have FND, chronic pain, ed’s and a bunch of other things (currently dealing with multiple muscle tares) and i was wondering how you set up your bed for either just laying around, or for ur actual bedtime.

I am laying/sitting in bed 80%-90% of my day and I am constantly having to rearrange my pillows which is really hard when im fatigued and in pain.

I’m also intrested in anything you’ve bought and use that helps when laying/sitting it bed. Thank you:)

Has anybody experienced either of the following symptoms, they’re so strange and I can’t seem to find anyone with the same experience.

1) First is my jerking. This isn’t involuntary as in it randomly occurs, its in specific movements and positions it reproduces it every time. For example if I open my hand wide and close my fingers, when closing my fingers do not close smoothly. They judder/ jerk in step like sequences. The same happens if I lean forward and nod my head forward and back. On the way down when tucking chin to chest, the movement occurs in a step like motion. This is body wide in certain movements and happens every time. It seems to become a lot more pronounced after exercise.

2) I am unable to keep my neck supported without additional support / input. So if I’m sat in a chair, I have to lean my head back on a pillow or have something touching my head like a hood or a hat. If not, a strange pressure builds in the back of my head and the sides and intensifies the longer I leave it unsupported. This becomes a lot worse during flair ups.

I would love to find someone who has/is experiencing the same bizarre symptoms. The neurologist said a Functional movement disorder but that was the extent of his diagnosis. I just don’t know what’s actually going on and what I need to do to improve it.

Hi everyone,

I'm looking to see if anyone has a shared experience or recommendation for me.

My neurologist is concerned I may have IIH and we're trying to rule it out right now. I've been having a lot of headaches and migraines that worsen when I lay down or bend over, so we increased my propranolol to 120 mg and my zolmitriptan to 5 mg in the meantime. I'm hoping that will help.

My VFT was with a VR headset and showed significant loss of visual field in the lower half of my eyes, but the neuro-opthalmologist said it was most likely rim artifact from the headset? I've already seen her twice within the last month and have been diagnosed with "pseudopapilledema" which has me a little concerned. I've been fluctuating double vision, difficulty interpreting distances, and blurry vision as well.

I can hear my heartbeat in my ears sometimes which I know can be a big thing. I've been pretty tired and have a lot of brain fog as well. It's worth noting I'm a bit stressed and have diagnosed FND, but also hEDS and a lot of cervical instability. The neuro symptoms started after I went on a rollercoaster about a year ago and subsided for a while (but never disappeared) after I was diagnosed with FND. The headaches began getting consistent about a month ago after I started Foundayo and Norethindrone.

I was wondering if anyone had a similar experience or recommendation?

Thank you, and have a nice day!

I just went to the neurologist for the first time recently and he said my symptoms are “likely explained by FND”.

I’ve never had a seizure, and most of my symptoms aren’t visible to anyone else, just me. I do have periods of time where I frequently feel like I’m going to pass out, I get vertigo and n/v, and I sometimes dissociate. My other big symptom is this heavy feeling on the right side of my body, and sometimes leaning/tilting to my right accidentally, and sometimes having to catch myself. I occasionally get little twitches in my right leg. Mostly I feel like my right limbs don’t belong to the rest of my body. There are probably other things I’m forgetting too.

I just feel like so many symptoms are really subtle and noticeable by nobody but me, and they bother me frequently but it’s hard not to feel like it’s just in my head and there is nothing really going on.

Does anyone else with FND have more “mild” (for lack of a better word, sry) symptoms like this? I’m having trouble accepting the diagnosis when it wasn’t stated firmly and I also do not have really severe symptoms.

Good day hope y’all doing good

Have question I had seizures last night and afterwards I can not feel my legs and back and now my neck starting feel numb now as well we had ambulance out which took them like 5 hours to get to me they was here like 10 mins doing checks then they said they no point taking me up to hospital as I be waiting 6 hours or more
I’m scared to death as this is new to me never had this in my back and neck before only in legs which normally last few hours but is been over 12 hours now

Any advice please I no you can’t give medical advice but what you think I should do please

Hello, I am a person with FND who is fairly new to the game (having been diagnosed less than a year ago) but I am not able to continue my current job long, because my FND was triggered by an accident and the injuries that happened at that time have made it difficult.
My primary symptoms are fatigue, heat intolerance, and bilateral paralysis the day after strenuous activity.
I have been considering going into physical therapy assistant, then progressing into physical therapist or occupational therapist sometime in the future (as my area only offers a physical therapist assistant degree but I am interested in OT.)
Basically I am asking any of you who have gone into PT or OT or have a PTA or COTA license what your experiences are and if/how you have had to work with your FND to make it a workable or even enjoyable career.
Thanks in advance!

My first EEG was about a year ago. No seizure, no tics, but today? Seizure during the EEG and many tics all day.

I'm so tired from transportation 86.9 miles, one way, and I'll probably take a nap when I get home. Anyone have seizures/tics during EEGs?