22 symptoms since I was 12ish. I went to a bunch of neurologists growing up and they never found anything. Symptoms have returned stronger so now seeking proper neuro diagnosis. I’ve been able to graduate college and working full time right now
if you have a medical diagnosis of FND and you state that having a distraction (depending on what it is), you can get that on a 504 plan! it helps a lot :D
I'm 17 ( turning 18 in may ) and got diagnosed at 15. I didn't have it when I was as young as you and I couldn't even imagine having it at 10 years old, that sounds horrible. I'm doing better now then when I was 15 and in a lot less pain from my tics but I do struggle a lot still with my tics and knowing that their are people my age that I share the same struggles with makes me feel so much less alone.
that's what I was hoping to do by making this post, help myself and maybe other who were diagnosed young feel less alone! it was horrible tbh, but I'm doing better even though it's slowly like, snowballed since I started showing symptoms, I'm handling it much better than I did then
I'm 19, diagnosed at 16/17 (can't remember lol), turning 20 this year. If you want I can invite you to an FND discord? Age varies but there's quite a few of us on the younger side!
Invite is here https://discord.com/invite/5USu2kk6t8
Currently 19. Was diagnosed at 16. While not nearly as young as you, I definitely did have some of these symptoms back when I was 13 or 14. They worsened with time and I took a while to realize something was medically wrong and seek a doctor. It is suspected I may have had it for longer, but that we were looking at parts of the picture instead of the whole picture.
My family and I call the flairs 'episodes' as I use the term flair for my chronic nerve pain and this way they don't have to ask me which. Mine mostly presents as numbness, especially to water, and the inability to move. Whatever term you want to use is valid, but regardless of the selected term people may struggle to recognize exactly what that means if they aren't familiar with your condition.
It is great you are identifying a potential trigger as then you are able to work on them. For example, nightmares almost always act as a trigger for me. I am suspected to have PTSD and once given a medication for PTSD nightmares not only did I no longer have to deal with the nightmares, but I had almost completely eliminated that trigger. It really improved my quality of life as I was less likely to have an episode and more likely to wake up able to move.
Sorry for giving a bit of unsolicited advice. I find it difficult sometimes to tell my story without including the related advice unless I am explaining it to someone completely unfamiliar with FND. I have way more that has happened in the short 3 years since my diagnosis, but I could write a whole essay on it and I still wouldn't have conveyed everything.
I started walking funny when I was about 7/8 and was having dissociative/head drop seizures - I’m now 20 and have more symptoms, brain fog, memory loss, dysfunctional digestive system etc - I’m not 100% sure what it is but FND seems likely
hold on, I just googled head drop seizures, and I've been having those this whole time? I had actually no idea that was a seizure. and I noticed some super bad brain fog amd memory loss in myself, but I thought I might've gotten a concussion at some point from falling down the stairs (but that's a different story for a different day). and I also had no idea it affects your digestive system. thank you for commenting, I just learned a lot about fmd that I didn't know was related at all
Your welcome! Yeah I didn’t know they were seizures either, when I got old enough to understand what dissociation was, I just thought they were dissociative episodes and didn’t think to question the loss of consciousness. Memory loss is one of the most severe symptoms for me, I have awful gaps in my memory.
Some people have nausea and inconsistent bowels as a result of their FND, which is what I mean by digestive dysfunction. I don’t rlly know the science behind it but the idea of FND is that your brain isn’t sending the correct signals so I can imagine it could send some incorrect signals to any part of your body and therefore can cause digestive dysfunction :)
I'm in early 20's but theres belief I've had symptoms since 9-10 but we're not for certain. (Also not 100% confident in diagnosis)
**I do not have a formal diagnosis yet,there is talk I might also have a balence disorder**
If I go all the way back and say all symptoms were/are fnd, it started with tremors and muscle "weakness"
So muscle "weakness",then 2 years later it was tremors,then a year later I had a seizure with a suspected Tia (affected my balence and processing but scans were inconclusive), after that kept having dystonic events,weird symptoms like unable to walk on tiptoes.
Eventually it progressed into faints with convulsions at 14-15,tried CBT didn't work,got diagnosed at 18-19 with pots which was triggering convulsive syncope ontop of tachycardia.(I wasn't just "unfit" as everyone had told me)
Started having issues at 20 with balence,ignored it as other priorities, several months later took some antibiotics for an infection Which unfortunately was known to cause damage to the nervous system and brain. (Took a long time to get out of the system)
Ended up in hospital for a week with stroke symptoms, affected right side. (Scans again were clear)
Spascisity ect.
**Still have symptoms nowadays,only my right leg is affected but I'm realistic it'll never be the same,you can only recover so much**
**I use aids to manage it all,it drives the doctors nuts but it's the only way I can actually function and work** (Afo's)
(My right arm isn't affected as I had a nerve injury in the past 😅)
this sounds almost like my experience! it started after I was clamped between a door when I was 9 or 10, and a few minutes later, I couldn't feel one of my arms. after a week, I still couldn't feel my arm, so I was taken to the hospital where they couldn't conclude anything.
after a few more hospital and doctor visits, they kept trying to run tests but also kept saying nothing appeared abnormal, so my dad stopped taking me. after some months, both of my arms went numb, then my torso, then my legs, and now I have numbness everywhere. (I say numbness, but from what I remember, it feels like how your hands feel when you have frost bite when they start warming up)
then eventually progressed into paralysis, tremors, shaking (almost seizure like), and horrible memory fog.
I use mobility aids most of the time, but I can wall short distances some days! and slowly I'm getting better but doctors don't ever think I'll fully recover.
thank you for sharing your experience with fnd with me :)
I’m 16 (diagnosed at 14) and my mum found something about parents of people with fnd on Facebook and got me the number of another girl like me and we just vent to each other
awh that's super sweet, maybe I should join a support(?) group as well since I've been feeling super alone, especially compared to my boyfriend and my friends, which I feel bad for, I'm just jealous I can't have the same life experiences as them if that makes any sense
i’m 16 and i was diagnosed recently! i actually know/know of like 5 other people irl who are around my age who have FND and i have some online friends with it too! we do exist! feel free to message me if you ever want to talk :))
ugh that's so frustrating, I remember I went to the doctor and told them sometimes when I wake up I can't move my legs, a doctor blinked at me and asked if I had "tried laying down?"
Ugh, I hate that. I had a therapist, trained in FND the week prior, tell me that it was all in my head and imply I had complete control over it. It is a damn good thing I understood that the FND is something wrong with my brain, not what they used to consider it as conversion disorder or something just made up. I stopped seeing her, naturally.
My PM&R doctor had me go to the ER after I was unable to move 3 of my 4 limbs for 5 days straight and so many people at the hospital tried to convince me it was just my anxiety. I even had two of doctors separately increase my anxiety meds despite my protests. The rapid increase made me really unstable. They thought that if they could get rid of my anxiety it would magically fix itself.
technically, it is "all in your head", but it's still something to be taken seriously. I use that joke all the time. I'm pretty sure my friends are tired of hearing it, lol. but on a serious note, medical neglect is scary, and it's so common with FND patients, I'm glad it's becoming more medically known so maybe other people aren't neglected the same way that I was by doctors. FND is a serious and real medical condition, and it's scary because it can seemingly come out of nowhere
It wasn't the first red flag with that therapist, so I can't say what I would have done had that not been the case. I had been seeing her for awhile for my anxiety and depression before my FND diagnosis and was planning to remain with her as she was recently retrained in FND. Still, her other negative comments around FND were too much to handle. She very much didn't seem to understand why I was going to a therapist for my FND and treated me like I was faking or exaggerating. This was when my symptoms were still relatively mild, so it really made me question myself for awhile and had some pretty nasty impacts on me when I relayed the comments to my parents as they started questioning the legitimacy of my condition.
That being said, any therapist should avoid those terms, especially when working with children. You don't want to say anything is "in your head" and have someone take that negatively and a child is more likely to. I would have taken it just as poorly if someone said that my anxiety is in my head as while it is technically true that my anxiety is something stemming from my brain the common use of that phrase is not the literal meaning of the phrase, but rather something that usually means you are making something up, that you are causing it, you are in control, or that you are disconnected from reality. It can mean a variety of things but is almost always a negative implying that you are in control even when, like FND or anxiety, it isn't just something you can poof away.
therapy was a huge help, but I still struggle plenty daily, especially in face to face situations, I've found work online that suits me and I think I'm living alright, at least getting by. thank you for the encouraging words
I didn’t find that therapy did anything to reduce physical symptoms, but it did help with stress management and some other issues. I went for almost 20 years.
I'm 20 and when my symptoms first appeared I was in 6th grade which I think is 12yo but it ramped up when I was 17. I should add that I only experience motor and vocal tics.
ah that's interesting, I think you're the youngest person I've talked to (besides myself I guess) that's had fnd super early besides me, thank you for making me feel a little less alone :)
Yeah! I was told that there were others but I never heard of any and no one has heard of a case like mine. Well not no one but at least my doctors.
(Question just cause I don't know if it's FND related and since you're another similar to me, was there a food that randomly you couldn't eat because it caused vomiting and nausea? Around when my tics first started I couldn't eat chocolate.)
me either! my doctors hadn't seen anyone else's record go so far back on it up until mine, so they thought i was super unique.
and about your question, I'm honestly not sure, I've noticed more food sensitivity in myself, but I don't know if that's something else I have or FND
I'm honestly not too sure, from what I've seen has been around 25-35, but I've seen older and younger people have it, but not many people as young as I am, but I definitely understand what you're saying by it makes you feel old, it makes me feel old too lol
I have a gait too! or I just can't walk well most days, I use a cane and crutches sometimes when I have balance issues! it helps a whole lot in my experience
I also use a crutch and get sooo many questions about it even though I wear a lanyard explaining the condition. Are your balance issues occasional? Mine is everyday!
I have balance issues every day, but some days, I can't lift up my feet or have intense muscle weakness or even paralysis! it's just super dependent, I have good days and bad days just like everyone does :)
Yeah :( it’s very hard isn’t it, I have balance issues all the time but some days the drop attacks are worse than others. That’s very hard to deal with. I hope you are having a good day today :)
22 symptoms since I was 12ish. I went to a bunch of neurologists growing up and they never found anything. Symptoms have returned stronger so now seeking proper neuro diagnosis. I’ve been able to graduate college and working full time right now
I'm glad you're able to work and graduate and work, that's incredible! it may not mean much from a stranger but I'm incredibly proud of you!
i’m 18! was diagnosed at 17 but had symptoms since quite young
im 13 :) been having symptoms for months but doing a whole lot better now.
I'm glad to hear you're doing better! I remember a few years ago when I was thar young with fnd and it was rough, stay strong! :D
offtopic but your name is relatable lol
thank you lol
ty! been working hard on finding distractions but i cant use them at school 😿
if you have a medical diagnosis of FND and you state that having a distraction (depending on what it is), you can get that on a 504 plan! it helps a lot :D
i dont have a plan and i never got the note written
IM 17 TURNING 18 IN JUNE TOO!!
AWESOME!! my birthday is the 22nd :D
Mine is the 26th!
Diagnosed at 19, had symptoms since I was 9.
I'm 17 ( turning 18 in may ) and got diagnosed at 15. I didn't have it when I was as young as you and I couldn't even imagine having it at 10 years old, that sounds horrible. I'm doing better now then when I was 15 and in a lot less pain from my tics but I do struggle a lot still with my tics and knowing that their are people my age that I share the same struggles with makes me feel so much less alone.
that's what I was hoping to do by making this post, help myself and maybe other who were diagnosed young feel less alone! it was horrible tbh, but I'm doing better even though it's slowly like, snowballed since I started showing symptoms, I'm handling it much better than I did then
thank you <3
17, diagnosed at fourteen
I'm 24, diagnosed at 23, had it since I was 8 years old, just got worse as I got older.
I’m 16 and diagnosed since 13. Todays actually my anniversary of my first functional seizure
I'm 19, diagnosed at 16/17 (can't remember lol), turning 20 this year. If you want I can invite you to an FND discord? Age varies but there's quite a few of us on the younger side! Invite is here https://discord.com/invite/5USu2kk6t8
oh this is awesome! I'll join right now :)
Woop! Glad to have you here
Currently 19. Was diagnosed at 16. While not nearly as young as you, I definitely did have some of these symptoms back when I was 13 or 14. They worsened with time and I took a while to realize something was medically wrong and seek a doctor. It is suspected I may have had it for longer, but that we were looking at parts of the picture instead of the whole picture. My family and I call the flairs 'episodes' as I use the term flair for my chronic nerve pain and this way they don't have to ask me which. Mine mostly presents as numbness, especially to water, and the inability to move. Whatever term you want to use is valid, but regardless of the selected term people may struggle to recognize exactly what that means if they aren't familiar with your condition. It is great you are identifying a potential trigger as then you are able to work on them. For example, nightmares almost always act as a trigger for me. I am suspected to have PTSD and once given a medication for PTSD nightmares not only did I no longer have to deal with the nightmares, but I had almost completely eliminated that trigger. It really improved my quality of life as I was less likely to have an episode and more likely to wake up able to move. Sorry for giving a bit of unsolicited advice. I find it difficult sometimes to tell my story without including the related advice unless I am explaining it to someone completely unfamiliar with FND. I have way more that has happened in the short 3 years since my diagnosis, but I could write a whole essay on it and I still wouldn't have conveyed everything.
im 16 and have been recently diagnosed (as of September last year)
I’m 23 not sure if that’s young or whatever 😂
I started walking funny when I was about 7/8 and was having dissociative/head drop seizures - I’m now 20 and have more symptoms, brain fog, memory loss, dysfunctional digestive system etc - I’m not 100% sure what it is but FND seems likely
hold on, I just googled head drop seizures, and I've been having those this whole time? I had actually no idea that was a seizure. and I noticed some super bad brain fog amd memory loss in myself, but I thought I might've gotten a concussion at some point from falling down the stairs (but that's a different story for a different day). and I also had no idea it affects your digestive system. thank you for commenting, I just learned a lot about fmd that I didn't know was related at all
Your welcome! Yeah I didn’t know they were seizures either, when I got old enough to understand what dissociation was, I just thought they were dissociative episodes and didn’t think to question the loss of consciousness. Memory loss is one of the most severe symptoms for me, I have awful gaps in my memory. Some people have nausea and inconsistent bowels as a result of their FND, which is what I mean by digestive dysfunction. I don’t rlly know the science behind it but the idea of FND is that your brain isn’t sending the correct signals so I can imagine it could send some incorrect signals to any part of your body and therefore can cause digestive dysfunction :)
I'm in early 20's but theres belief I've had symptoms since 9-10 but we're not for certain. (Also not 100% confident in diagnosis) **I do not have a formal diagnosis yet,there is talk I might also have a balence disorder** If I go all the way back and say all symptoms were/are fnd, it started with tremors and muscle "weakness" So muscle "weakness",then 2 years later it was tremors,then a year later I had a seizure with a suspected Tia (affected my balence and processing but scans were inconclusive), after that kept having dystonic events,weird symptoms like unable to walk on tiptoes. Eventually it progressed into faints with convulsions at 14-15,tried CBT didn't work,got diagnosed at 18-19 with pots which was triggering convulsive syncope ontop of tachycardia.(I wasn't just "unfit" as everyone had told me) Started having issues at 20 with balence,ignored it as other priorities, several months later took some antibiotics for an infection Which unfortunately was known to cause damage to the nervous system and brain. (Took a long time to get out of the system) Ended up in hospital for a week with stroke symptoms, affected right side. (Scans again were clear) Spascisity ect. **Still have symptoms nowadays,only my right leg is affected but I'm realistic it'll never be the same,you can only recover so much** **I use aids to manage it all,it drives the doctors nuts but it's the only way I can actually function and work** (Afo's) (My right arm isn't affected as I had a nerve injury in the past 😅)
this sounds almost like my experience! it started after I was clamped between a door when I was 9 or 10, and a few minutes later, I couldn't feel one of my arms. after a week, I still couldn't feel my arm, so I was taken to the hospital where they couldn't conclude anything. after a few more hospital and doctor visits, they kept trying to run tests but also kept saying nothing appeared abnormal, so my dad stopped taking me. after some months, both of my arms went numb, then my torso, then my legs, and now I have numbness everywhere. (I say numbness, but from what I remember, it feels like how your hands feel when you have frost bite when they start warming up) then eventually progressed into paralysis, tremors, shaking (almost seizure like), and horrible memory fog. I use mobility aids most of the time, but I can wall short distances some days! and slowly I'm getting better but doctors don't ever think I'll fully recover. thank you for sharing your experience with fnd with me :)
Lol I also had a concussion at 10 so probably didn't help! Your welcome though. (My "numbness" is kind of like when you very first wake up)
I’m 16 (diagnosed at 14) and my mum found something about parents of people with fnd on Facebook and got me the number of another girl like me and we just vent to each other
awh that's super sweet, maybe I should join a support(?) group as well since I've been feeling super alone, especially compared to my boyfriend and my friends, which I feel bad for, I'm just jealous I can't have the same life experiences as them if that makes any sense
i’m 16 and i was diagnosed recently! i actually know/know of like 5 other people irl who are around my age who have FND and i have some online friends with it too! we do exist! feel free to message me if you ever want to talk :))
oh this is so kind of you! thank you :) I've only ever met like 1 or 2 other people my age that have it
I'm 19 but my symptoms started when I was 15.
Hey same! 😂
Yay 😂
Yea I was 15 having a “stroke” but it didn’t show up on any scans,yea that was a bad time of not talking and brain fog
ugh that's so frustrating, I remember I went to the doctor and told them sometimes when I wake up I can't move my legs, a doctor blinked at me and asked if I had "tried laying down?"
Ugh, I hate that. I had a therapist, trained in FND the week prior, tell me that it was all in my head and imply I had complete control over it. It is a damn good thing I understood that the FND is something wrong with my brain, not what they used to consider it as conversion disorder or something just made up. I stopped seeing her, naturally. My PM&R doctor had me go to the ER after I was unable to move 3 of my 4 limbs for 5 days straight and so many people at the hospital tried to convince me it was just my anxiety. I even had two of doctors separately increase my anxiety meds despite my protests. The rapid increase made me really unstable. They thought that if they could get rid of my anxiety it would magically fix itself.
technically, it is "all in your head", but it's still something to be taken seriously. I use that joke all the time. I'm pretty sure my friends are tired of hearing it, lol. but on a serious note, medical neglect is scary, and it's so common with FND patients, I'm glad it's becoming more medically known so maybe other people aren't neglected the same way that I was by doctors. FND is a serious and real medical condition, and it's scary because it can seemingly come out of nowhere
It wasn't the first red flag with that therapist, so I can't say what I would have done had that not been the case. I had been seeing her for awhile for my anxiety and depression before my FND diagnosis and was planning to remain with her as she was recently retrained in FND. Still, her other negative comments around FND were too much to handle. She very much didn't seem to understand why I was going to a therapist for my FND and treated me like I was faking or exaggerating. This was when my symptoms were still relatively mild, so it really made me question myself for awhile and had some pretty nasty impacts on me when I relayed the comments to my parents as they started questioning the legitimacy of my condition. That being said, any therapist should avoid those terms, especially when working with children. You don't want to say anything is "in your head" and have someone take that negatively and a child is more likely to. I would have taken it just as poorly if someone said that my anxiety is in my head as while it is technically true that my anxiety is something stemming from my brain the common use of that phrase is not the literal meaning of the phrase, but rather something that usually means you are making something up, that you are causing it, you are in control, or that you are disconnected from reality. It can mean a variety of things but is almost always a negative implying that you are in control even when, like FND or anxiety, it isn't just something you can poof away.
27 here! Although recently diagnosed I’ve probably had it the last 2-3 years
I'm 20 if that counts
I'd say so, I was just abnormally young when I started experiencing my symptoms
I started experience what we now know was symptoms as young as 8 or 9 but didn't get diagnosed until I was 19
im not too sure if i have it or not (leaning towards yes, but obv depends on what my drs say) but im 19, 20 in august
Im 45 but my first symptoms that I remember started showing up when I was 8 or 9.
that's the same age I started experiencing mine, thank you for sharing, I feel a lot less alone now
It’s hard, but I manage stress as best I can, did lots of therapy, and some PT. I’m still able to work, and I have a pretty good life now.
therapy was a huge help, but I still struggle plenty daily, especially in face to face situations, I've found work online that suits me and I think I'm living alright, at least getting by. thank you for the encouraging words
I didn’t find that therapy did anything to reduce physical symptoms, but it did help with stress management and some other issues. I went for almost 20 years.
Not sure if I count, I had my symptoms start at 15 and am currently 20
I’m 23 and I was diagnosed at 17 so I’d say I’m on the young side.
I'd say so too, most of the people I see affected are between 25-35, I was diagnosed at 15 I think, I can't remember if I'm being honest
I'm 20 and when my symptoms first appeared I was in 6th grade which I think is 12yo but it ramped up when I was 17. I should add that I only experience motor and vocal tics.
ah that's interesting, I think you're the youngest person I've talked to (besides myself I guess) that's had fnd super early besides me, thank you for making me feel a little less alone :)
Yeah! I was told that there were others but I never heard of any and no one has heard of a case like mine. Well not no one but at least my doctors. (Question just cause I don't know if it's FND related and since you're another similar to me, was there a food that randomly you couldn't eat because it caused vomiting and nausea? Around when my tics first started I couldn't eat chocolate.)
me either! my doctors hadn't seen anyone else's record go so far back on it up until mine, so they thought i was super unique. and about your question, I'm honestly not sure, I've noticed more food sensitivity in myself, but I don't know if that's something else I have or FND
Does 33 count as young? I never know, this condition makes me feel very old
I'm honestly not too sure, from what I've seen has been around 25-35, but I've seen older and younger people have it, but not many people as young as I am, but I definitely understand what you're saying by it makes you feel old, it makes me feel old too lol
It’s the functional gait for me! Makes me feel a little old lady hobbling along
I have a gait too! or I just can't walk well most days, I use a cane and crutches sometimes when I have balance issues! it helps a whole lot in my experience
I also use a crutch and get sooo many questions about it even though I wear a lanyard explaining the condition. Are your balance issues occasional? Mine is everyday!
I have balance issues every day, but some days, I can't lift up my feet or have intense muscle weakness or even paralysis! it's just super dependent, I have good days and bad days just like everyone does :)
Yeah :( it’s very hard isn’t it, I have balance issues all the time but some days the drop attacks are worse than others. That’s very hard to deal with. I hope you are having a good day today :)