This is a great video. I've had my condition for over 9 years now and diagnosed with FND just a couple of years ago. My biggest issue with FND is that far too many clinicians and others are still hung up on the Conversion Disorder mentality. Meaning that some psychological event(s) have been "converted" into the physical symptoms that they're experiencing. FND, Psychological triggers were removed as a pre-requisite for FND. Many people with FND have had their symptoms triggered by physical injuries and other things such as different medications. If what triggered the symptoms is not being addressed, then how on earth can these people recover? If a person broke their leg, are they going to be sent to counselling instead of getting their leg looked after? Yet that is exactly what is happening with many people with FND because FND is listed in the DSM 5. So as long as FND is categorized as a Mental Disorder in the DSM 5, many clinicians will completely disregard the physical symptoms that are in fact caused by things like physical injuries and not get the treatments such as Physiotherapy that they need. I experienced an axial load injury of my entire spine over 9 years ago. Since then many have jumped on the psychological bandwagon, including FND. My symptoms do tie in with FND, but Psychological was not the trigger. It was a Physical Injury. Yet I'm routinely denied the Physical Therapies that I need to recover because FND is listed as a Mental Disorder in the DSM 5.
Thanks for your comment! Yes you're right. No matter caused the condition, usually just having counselling doesn't fix very physical symptoms. Patients need access to a combination of things like physiotherapy AND other treatments.
Agree .mine was caused by a head injury while I was at work. The next day I lost my balance. And had a massive headache. And I still do get these painful headaches. Soo exhausting and mentally draining. The fatigue I get with this is soo bad. I end up needing to sleep or rest every 20 minutes.
Stress has real effects on the body. It can worsen illnesses in all diseases. I wouldn’t be surprised if stress is the straw that breaks the camel back. The brain is a powerful organ but still an organ and sometimes organs act up.
Thought I was gonna croak yesterday ,a bad one .I usually just get it in my arms and head ,but twice had whole body experience .Pretty horrible .Have not been diagnosed but have aphasia and dropping thoughts .Hoping for good news but I doubt it .Just got to live with it .😊 Be well everyone .
I have a question. I have recently been told by a neurologist whom I have never actually met due to Covid and my current health conditions that I may have FND. I have not yet been properly diagnosed and I have done alot of research on the condition and I don't believe I have this. I know they say it's not something you put on or can control but I actually have other conditions. These conditions have already been diagnosed, one of which includes EDS3 also known as HSD which in my case complicates my recovery of the Epidural vascular congestion that is compressing my nerves in the low back due to the fact that my entire body is hypermoblie so my joints can literally dislocate/subluxe at any time. Yet the neurologist is ignoring all of this and trying to diagnose me with FND when I feel I don't have it anyway. My GP has told me that it's the neurologists job to treat the Epidural Vascular Congestion yet due to me being in that much pain and the weakness in my leg that it causes I am bedbound and have been now since October 2019. What I have found out about the vascular congestion is that it's very rare and usally happens in people who are over 40 years old with an average age of 62 years and I'm 24. It causes neurological symptoms especially in the low back and legs where I'm experiencing problems yet I feel the neurologist is dismissing me saying its FND when he hasn't even met me due to the pandemic and my health. Can a neurologist diagnose FND just by talking to you on the phone? Or does the neurologist have to physically see you in person to diagnose you properly? Because I don't think I've fully been assessed and I also only had 1 phone appointment with the neurologist and he was saying FND without me even fully explaining my symptoms nor him even asking. I also don't believe he even knows what EDS is and how badly it affects me during a flare up that I'm currently in.
Hi Chaya thanks for the question. There are a lot of people who have both FND AND EDS. I think in the future they will find some kind of genetic research about it. If you don't feel FND is the right diagnosis for you, it is okay to get a second opinion. It's a bit strange to be diagnosed without a physical examination. For example, the neurologist might see your HSD symptoms in person, or they might do all the physical reflex and response tests which can help towards an FND diagnosis. (I was diagnosed after the neurologist took my history, MRIs and EEG were clear, and a physical test called Hoover's Sign showed I had FND)
I just discovered that FND is not a diagnosis, its an opinion which can disappear from your notes as quickly as it was put there. This neurologist is giving you his opinion but I would say, get a second opinion before it ends up in your medical notes.
I was diagnosed 2 years ago and this was after I hit my head. At first they thought it was a head concussion and afterwards after 11 months . Eleven months I was eventually referred to a neurologist who I feel doesnt know much about FND. However I havent had any checkups or reviews since 2020. The symptoms I have severe headaches at times. Chronic fatigue and balance issues. And some people think its hereditary which isnt true. None of my Fathers or Mothers family have this medical condition. I hate how they put it down to mental issues because it's not.
I should make an updated video. Even though now I realise I had some trauma, I still believe a person needs appropriate treatment to improve the symptoms which involves specialist neurophysiotherapist, neurologist medication assessment, neuropsychologist and maybe occupational therapist.
This was a great video! I have had FND for 3 years now. I took a big blow to the head about 2 years prior to my first FND symptom that I thought at the time that I was having a stroke. The blow to the head was the beginning of many changes to my personality and lifestyle. I have had some struggles trying to find great treatment in my area and have to resort to travel. My most recent event were some of the worst tremors I’ve had since I first got my FND in 2019, that started affecting my right side in addition to my left. ua-cam.com/video/ImskFNN5jGg/v-deo.html I have had 3 counselors that have helped me with some PTSD and identify triggers and use strategies to help minimize symptoms.
Thanks for sharing. It's always nice to see there are other FND youtubers now! Sometimes you can have FND with symptoms of other conditions and it's hard even for the specialists to know what's what. You're strong and you can keep going!
@@Lentilboots Aww, thank you! I watch as many UA-cam videos on FND and especially those that have it because nobody knows it better than we do! I will keep going as best as I can and never give up!
This is a great video. I've had my condition for over 9 years now and diagnosed with FND just a couple of years ago.
My biggest issue with FND is that far too many clinicians and others are still hung up on the Conversion Disorder mentality. Meaning that some psychological event(s) have been "converted" into the physical symptoms that they're experiencing. FND, Psychological triggers were removed as a pre-requisite for FND. Many people with FND have had their symptoms triggered by physical injuries and other things such as different medications.
If what triggered the symptoms is not being addressed, then how on earth can these people recover? If a person broke their leg, are they going to be sent to counselling instead of getting their leg looked after?
Yet that is exactly what is happening with many people with FND because FND is listed in the DSM 5. So as long as FND is categorized as a Mental Disorder in the DSM 5, many clinicians will completely disregard the physical symptoms that are in fact caused by things like physical injuries and not get the treatments such as Physiotherapy that they need.
I experienced an axial load injury of my entire spine over 9 years ago. Since then many have jumped on the psychological bandwagon, including FND. My symptoms do tie in with FND, but Psychological was not the trigger. It was a Physical Injury. Yet I'm routinely denied the Physical Therapies that I need to recover because FND is listed as a Mental Disorder in the DSM 5.
Thanks for your comment! Yes you're right. No matter caused the condition, usually just having counselling doesn't fix very physical symptoms. Patients need access to a combination of things like physiotherapy AND other treatments.
Agree
.mine was caused by a head injury while I was at work. The next day I lost my balance. And had a massive headache. And I still do get these painful headaches. Soo exhausting and mentally draining. The fatigue I get with this is soo bad. I end up needing to sleep or rest every 20 minutes.
Stress has real effects on the body. It can worsen illnesses in all diseases. I wouldn’t be surprised if stress is the straw that breaks the camel back. The brain is a powerful organ but still an organ and sometimes organs act up.
I have had #fnd for 38 years but it took 30 years to correctly diagnose it. Thanks for sharing this video.❤
Thought I was gonna croak yesterday ,a bad one .I usually just get it in my arms and head ,but twice had whole body experience .Pretty horrible .Have not been diagnosed but have aphasia and dropping thoughts .Hoping for good news but I doubt it .Just got to live with it .😊 Be well everyone .
That is really tough 😔 I hope today is a better day for you
Brilliant Lenny, Thank You so much.
Paul in QLD.
Just been diagnosed. Thank you for education you offer in the video. Trying to be positive
Wonderful presentation! This will be so helpful for my carers and family. Have a great day.
Such a a great and important video Lenny!!! Thank you for making this!!
Thanks for your video Lenny. its very inspiring and informative...
I have a question. I have recently been told by a neurologist whom I have never actually met due to Covid and my current health conditions that I may have FND. I have not yet been properly diagnosed and I have done alot of research on the condition and I don't believe I have this. I know they say it's not something you put on or can control but I actually have other conditions. These conditions have already been diagnosed, one of which includes EDS3 also known as HSD which in my case complicates my recovery of the Epidural vascular congestion that is compressing my nerves in the low back due to the fact that my entire body is hypermoblie so my joints can literally dislocate/subluxe at any time. Yet the neurologist is ignoring all of this and trying to diagnose me with FND when I feel I don't have it anyway. My GP has told me that it's the neurologists job to treat the Epidural Vascular Congestion yet due to me being in that much pain and the weakness in my leg that it causes I am bedbound and have been now since October 2019. What I have found out about the vascular congestion is that it's very rare and usally happens in people who are over 40 years old with an average age of 62 years and I'm 24. It causes neurological symptoms especially in the low back and legs where I'm experiencing problems yet I feel the neurologist is dismissing me saying its FND when he hasn't even met me due to the pandemic and my health. Can a neurologist diagnose FND just by talking to you on the phone? Or does the neurologist have to physically see you in person to diagnose you properly? Because I don't think I've fully been assessed and I also only had 1 phone appointment with the neurologist and he was saying FND without me even fully explaining my symptoms nor him even asking. I also don't believe he even knows what EDS is and how badly it affects me during a flare up that I'm currently in.
Hi Chaya thanks for the question. There are a lot of people who have both FND AND EDS. I think in the future they will find some kind of genetic research about it.
If you don't feel FND is the right diagnosis for you, it is okay to get a second opinion. It's a bit strange to be diagnosed without a physical examination. For example, the neurologist might see your HSD symptoms in person, or they might do all the physical reflex and response tests which can help towards an FND diagnosis. (I was diagnosed after the neurologist took my history, MRIs and EEG were clear, and a physical test called Hoover's Sign showed I had FND)
I just discovered that FND is not a diagnosis, its an opinion which can disappear from your notes as quickly as it was put there. This neurologist is giving you his opinion but I would say, get a second opinion before it ends up in your medical notes.
I have EDS fibromyalgia and FND.
@@Lentilbootsthe link with the heds is autism OCD adhd I have them.all the Asperger's is the reason for fnd
I was diagnosed 2 years ago and this was after I hit my head. At first they thought it was a head concussion and afterwards after 11 months . Eleven months I was eventually referred to a neurologist who I feel doesnt know much about FND. However I havent had any checkups or reviews since 2020. The symptoms I have severe headaches at times. Chronic fatigue and balance issues. And some people think its hereditary which isnt true. None of my Fathers or Mothers family have this medical condition. I hate how they put it down to mental issues because it's not.
Sounds like you've needed much more support than you received from those doctors!
i dont have "episodes", i have symptoms 24/7.
I have FND it’s like the hardware is fine the brain but the software is faulty.
Thankyou for the video I have FND
Mine is stress related, I think shellshock men after war had FND .
Yes! Quit looking for past trauma. I’m so tired of “them” looking for something to blame this on.
I should make an updated video. Even though now I realise I had some trauma, I still believe a person needs appropriate treatment to improve the symptoms which involves specialist neurophysiotherapist, neurologist medication assessment, neuropsychologist and maybe occupational therapist.
This was a great video! I have had FND for 3 years now. I took a big blow to the head about 2 years prior to my first FND symptom that I thought at the time that I was having a stroke. The blow to the head was the beginning of many changes to my personality and lifestyle. I have had some struggles trying to find great treatment in my area and have to resort to travel. My most recent event were some of the worst tremors I’ve had since I first got my FND in 2019, that started affecting my right side in addition to my left. ua-cam.com/video/ImskFNN5jGg/v-deo.html
I have had 3 counselors that have helped me with some PTSD and identify triggers and use strategies to help minimize symptoms.
Thanks for sharing. It's always nice to see there are other FND youtubers now! Sometimes you can have FND with symptoms of other conditions and it's hard even for the specialists to know what's what. You're strong and you can keep going!
@@Lentilboots Aww, thank you! I watch as many UA-cam videos on FND and especially those that have it because nobody knows it better than we do! I will keep going as best as I can and never give up!
Do you work ?
I have had months where I worked part time but not at the moment.
Quit sugar you will huge changes
Talking in circles