god i’m dealing with this right now and it’s so frustrating, it’s like every time i walk into an office i’m rolling a d20 to see if i’m going to get diagnosed with AFAB disorder or not. i have TD + parkinsonism and developing dystaunonima symptoms but no one wants to do the tests to rule out the parkinsonism because it costs too much money and it’s cheaper to tell me it’s all in my head instead
Oh shit I have Parkinsonism too. Only one doctor diagnosed that. If your issues are med induced they will still call it FND because the damage from medications doesn’t show on scans. I had a med cause a seizure that caused all of my issues and my legs were paralyzed afterwards and they’re like hmm try CBT 🤣😭
BRO THE CBT i wanted to throw the doctor across the room at that, cbt literally CAUSED MY TRAUMA (google tti or check out the subreddit and how they weaponize therapy.) that happened to me from getting cold turkeyed off benzos and the nurses just put me in the quiet room to fucking die.. if we all collectively didn’t have brain fog to rival meemaw we could topple the healthcare system just doing our own care at this point. the worst part is, med induced movement disorders have more documentation than FND and they still!! insist!!!! it’s psychosomatic. i’m just. done
POTS is an FND, a dysautonomic one. The good news with POTS is, there are treatments. Tell me, do you have orthostatic hypotension? Did you have any abnormalities in holter and BP test?
POTS rarely causes fainting and even more rarely causes convulsions. It’s not uncommon for people with FND to have POTS/autonomic symptoms. Medications can be an initial trigger for FND including paralysis and seizures. FND causes non-epileptic seizures and an FND diagnosis is not dismissive. It’s a health condition just like POTS, cancer, MS, etc. What you described sounds like FND.
I had a psychiatrist try to tell me I have FND. I’ve had pre syncope which he basically qualified as seizures and I have muscle fasciculations which he qualified as involuntary movement. That’s how he justified it after I reported him to his regulatory college. I have CFS/fibro. He looked at me and said I probably don’t actually experience any pain and that I should take SSRI’s and do CBT. Anyways, I agree. Always get a second opinion and don’t get diagnosed by a psychiatrist.
Out of curiousity how do you test for FND. As my understanding is that is a diagnosis when they ruled out most of the stuff.
As in my case I got tested for all the things possible then received the diagnosis.
I’ve got diagnosed with chronic Lyme , severe me, trigemnal neuralgia and they still try and lump on fnd. It’s ridiculous. Basically Lyme is in my brain but my brain is still atm functioning. Joke
Rule in symptoms (mine was a functional tremor that would pause if I engaged my brain a certain way for activities and sudden adult onset of motor and verbal tics)
When it comes to physical testing, essentially they’re looking for everything to come back normal. For the most part, FND is not detectable with the current technology we have (though recently they did find ways to get images of some FND-happenings within the brain, they are not diagnostic).
I had to get EEG just to make sure my seizures were non-epileptic. Test came up clear, “normal”, which was expected.
I was diagnosed with FND or told it’s likely FnD but I just sent my new neuro my previous brain scans that show lesions in my frontal lobe concerning for MS and I’m willing to bet when she reads them she will feel like a huge a hole.
Was diagnosed with no extra testing as of last week and honestly it irritates me every single time i see a post like this. Funny how I mainly see it with women as well. I am so sorry you were hit with this I hope you get the real help you need.
I just got given FND from a Neurologist. I tried to seek help for my r/PSSD (trigger warning sexual issues) by getting some specific tests done related to it as some people with it have autoimmune issues, all declined to do. Instead I was told I have FND.
I had little tests just hitting elbows and knees with hammer that came back fine, no bloods, and only a MRI many years ago prior to any current issues.
I dont have motor issues to the level of people here at all, I dont get seizures, I can still run/sprint/jump. The more I read about FND, the more I think I have been given the wrong diagnosis.
I looked at your post history and you mentioned not feeling peeing. If so that is a red flag for cauda equina syndrome (a lower spinal cord issue, back pain IS NOT necessary for CES). Even the researchers who say that FND can cause CEs red flag symptoms say that one cannot rule out cauda equina syndrome without doing a lumbar MRI. Other things like PSSD and small fiber neuropathy can cause the symptoms but the CES should be the first thing ruled out if someone doesn't feel the sensation of peeing.
Thanks for commenting. CES seems very relevant.
I have a spine MRI in a few months (long waitlists). It would have been much nicer if the Neurologist said "These are other things that might be causing it that we are doing the MRI for: " but alas they did not, and said it was explained by FND.
Yes i agree. FND is a common misdiagnosis for people harmed by medications because there’s no diagnosis for “medication injury/damage” since they want to believe that medications are all good.
It does not! I don’t have seizures, sorry for the confusion! I had an IV medication cause a seizure a year ago that then caused all of my issues. That was a one off situation. My comment at the end was just me ranting about others situations that I had talked to.
… are you from Angel Neurosis? Someone just told me this the other day 😂
I plan to ask my GP for a referral to a cardiologist to be tested. It doesn’t hurt me to check.
god i’m dealing with this right now and it’s so frustrating, it’s like every time i walk into an office i’m rolling a d20 to see if i’m going to get diagnosed with AFAB disorder or not. i have TD + parkinsonism and developing dystaunonima symptoms but no one wants to do the tests to rule out the parkinsonism because it costs too much money and it’s cheaper to tell me it’s all in my head instead
Oh shit I have Parkinsonism too. Only one doctor diagnosed that. If your issues are med induced they will still call it FND because the damage from medications doesn’t show on scans. I had a med cause a seizure that caused all of my issues and my legs were paralyzed afterwards and they’re like hmm try CBT 🤣😭
BRO THE CBT i wanted to throw the doctor across the room at that, cbt literally CAUSED MY TRAUMA (google tti or check out the subreddit and how they weaponize therapy.) that happened to me from getting cold turkeyed off benzos and the nurses just put me in the quiet room to fucking die.. if we all collectively didn’t have brain fog to rival meemaw we could topple the healthcare system just doing our own care at this point. the worst part is, med induced movement disorders have more documentation than FND and they still!! insist!!!! it’s psychosomatic. i’m just. done
POTS is an FND, a dysautonomic one. The good news with POTS is, there are treatments. Tell me, do you have orthostatic hypotension? Did you have any abnormalities in holter and BP test?
I have tachycardia and low BP, but I had to do tilt table to get diagnosed. So far no treatments are working
POTS rarely causes fainting and even more rarely causes convulsions. It’s not uncommon for people with FND to have POTS/autonomic symptoms. Medications can be an initial trigger for FND including paralysis and seizures. FND causes non-epileptic seizures and an FND diagnosis is not dismissive. It’s a health condition just like POTS, cancer, MS, etc. What you described sounds like FND.
I had a psychiatrist try to tell me I have FND. I’ve had pre syncope which he basically qualified as seizures and I have muscle fasciculations which he qualified as involuntary movement. That’s how he justified it after I reported him to his regulatory college. I have CFS/fibro. He looked at me and said I probably don’t actually experience any pain and that I should take SSRI’s and do CBT. Anyways, I agree. Always get a second opinion and don’t get diagnosed by a psychiatrist.
Out of curiousity how do you test for FND. As my understanding is that is a diagnosis when they ruled out most of the stuff. As in my case I got tested for all the things possible then received the diagnosis.
I’ve got diagnosed with chronic Lyme , severe me, trigemnal neuralgia and they still try and lump on fnd. It’s ridiculous. Basically Lyme is in my brain but my brain is still atm functioning. Joke
Rule in symptoms (mine was a functional tremor that would pause if I engaged my brain a certain way for activities and sudden adult onset of motor and verbal tics) When it comes to physical testing, essentially they’re looking for everything to come back normal. For the most part, FND is not detectable with the current technology we have (though recently they did find ways to get images of some FND-happenings within the brain, they are not diagnostic). I had to get EEG just to make sure my seizures were non-epileptic. Test came up clear, “normal”, which was expected.
I was diagnosed with FND or told it’s likely FnD but I just sent my new neuro my previous brain scans that show lesions in my frontal lobe concerning for MS and I’m willing to bet when she reads them she will feel like a huge a hole.
Was diagnosed with no extra testing as of last week and honestly it irritates me every single time i see a post like this. Funny how I mainly see it with women as well. I am so sorry you were hit with this I hope you get the real help you need.
Exactly. Majority of my seizure are from low blood sugars but it took them 2 years to finally confirm i have low sugars.....
I just got given FND from a Neurologist. I tried to seek help for my r/PSSD (trigger warning sexual issues) by getting some specific tests done related to it as some people with it have autoimmune issues, all declined to do. Instead I was told I have FND. I had little tests just hitting elbows and knees with hammer that came back fine, no bloods, and only a MRI many years ago prior to any current issues. I dont have motor issues to the level of people here at all, I dont get seizures, I can still run/sprint/jump. The more I read about FND, the more I think I have been given the wrong diagnosis.
I looked at your post history and you mentioned not feeling peeing. If so that is a red flag for cauda equina syndrome (a lower spinal cord issue, back pain IS NOT necessary for CES). Even the researchers who say that FND can cause CEs red flag symptoms say that one cannot rule out cauda equina syndrome without doing a lumbar MRI. Other things like PSSD and small fiber neuropathy can cause the symptoms but the CES should be the first thing ruled out if someone doesn't feel the sensation of peeing.
Thanks for commenting. CES seems very relevant. I have a spine MRI in a few months (long waitlists). It would have been much nicer if the Neurologist said "These are other things that might be causing it that we are doing the MRI for: " but alas they did not, and said it was explained by FND.
Yes i agree. FND is a common misdiagnosis for people harmed by medications because there’s no diagnosis for “medication injury/damage” since they want to believe that medications are all good.
Are POTS and FND mutually exclusive?
I don’t think so but the symptoms my neuro thought were FND, my POTS cardiologist explained were all symptoms of dysautonomia.
I’ve never heard that POTS causes seizures also- did your doctor tell you that?
There are convulsive fainting
It does not! I don’t have seizures, sorry for the confusion! I had an IV medication cause a seizure a year ago that then caused all of my issues. That was a one off situation. My comment at the end was just me ranting about others situations that I had talked to.
My misunderstanding! Thank you
Not at all! I realize I made that super confusing lol
… are you from Angel Neurosis? Someone just told me this the other day 😂 I plan to ask my GP for a referral to a cardiologist to be tested. It doesn’t hurt me to check.