After 7 years of neurological issues I’ve recently been diagnosed with FND/FMD. It has been a whirlwind of emotions. Having so many tests and seeing so many doctors has been exhausting. I don’t seem to have a mental health component to my disorder but not everyone does. The worst part of my symptoms were partial paralysis, unable to stand or walk, full body muscle weakness from head to toe including my vocal muscles. I developed chronic hiccups that lasted for 3 years!! Muscle spasms, seizure “like” activity and a slew of other symptoms. I lost my independence and I’m no longer able to drive or live on my own. FND is real. It’s not a person making up weird symptoms. It’s where your neural connections misfire and your normal brain signals are interrupted. It’s a lifelong disorder with ups and downs. All you can do is to keep trying to get better. Don’t give up. There’s always hope❤Sending my love and support to anyone struggling with this condition. Xo
@@casseyklie Lol yup they average about 10-50+ a day for 3 years! Luckily in the past few months they’ve tapered down quite a bit but they were pretty relentless. I hope you’re doing well and I appreciate the videos you’ve made sharing your experience 😊
Thought I'd leave a second message. I just got to the end of the video and wanted to say I'm so so sorry this happened to you. You're coping so well and I'm so glad that you've recognised how to take care of yourself and are learning how to give yourself the love you need and deserve. I find any stress makes me worse and like you, I'm learning my stressors and learning not to be so hard on myself or my body. Thank you and take good care of yourself. It helps to know we are not alone.
Hi Cassey, I relate to so much in your video. It's been a year since my FND diagnosis. I'm in a similar spot to you in healing- physically, mentally & emotionally. I'm glad you have supportive people around you because the healing you're (we're) doing is wildly challenging. I've no idea what my future looks like physically, but my heart and mind are healing & strengthening, and I hope that will help my messed up movements and cognition to improve as well. Thanks for sharing your story.
I have been diegnosed with FND for only 6 months & i really appreciate people like yourself that post on TH-cam about your jorney with FND , you may not no it at the time you post but you have helped me & others with it a lot We are the only ones who know about it & we all feel so lonely with it so we all need to share
Hello Cassey. Thank you so much for your videos. They really help. I relate so much to your symptoms and your self help tools. I don't have the diagnosis but I have a bunch of psychiatric labels. FND makes a lot of sense to me.
Sending lots of hugs. I know exactly how you feel. I see my daughter's struggles every day with all her complex needs. Hang in there ok. You are so strong with your journey in life and acceptance 😢
Thank you very much for your help even if you don't know that you are I can't put my feet together at all or anything with my hands without a lot of concentration it's very tiring. I've been diagnosed with FND thank you again for your help
Thanks fot being brave enough to show what you go through. It is comforting to know I am not alone in knowing how terrifying and disabling FND can be. I have also had all of the symptoms you have shown and without the support of my wife and my son I would not have even been able to function. It is great to see you have been doing well with your recovery and I wish you all the best.
Hi again. I want to thank you so much for opening up and telling us your feelings. I know that can be very hard. I am also on the spectrum and have FND. This last month my seizure count has risen again and it makes me nervous. I am lucky I am in therapy and have a very supportive family and like you I am immersed in arts of all kind especially painting. This illness can really make you feel so alone and yet also not wanting to be around other people. I definitely have an issue with being out in public because of seizures as well. Some days can be so much more rough than others but I'm glad that I was able to find you on TH-cam and know that I am not alone. Hugs from your friend in Alberta. Xx
I've been an a challenging journey myself, thank you for being so brave and sharing yours. My therapist recently had me read "Healing Back Pain" by John E. Sarno. It's not necessarily for back pain, it's more about the power of mind & emotions. (I listened to the audio book version in 2 days and found a link to a movie it references which is so good, I'll look for it for you.) You've gone through trauma and it's manifesting in your body. This book suggests once you recognize certain things, you can reclaim parts of your body that used to work just fine. I had to surrender to believing in this book, which was the hardest part. But I did get some healing and do function better more days than not. It's challenging because I don't necessarily believe all of this book but accepting the concept may help your brain jump back to the healthy neuro-loops you used as a normally functional person before all of this started. There healthy neuro loops are still in your brain, you need to get back on the right track. Art therapy is awesome. Learning something new, all the time, it key to keep your brain healthy. Zentangle is my favorite at the moment but it always changes. I'm going to look for the movie link now.
@@casseyklie I wasn't 'magically' cured, but I am less symptomatic. I also wouldn't be surprised if you have something else beyond FND. I have hEDS, dysautonomia, neuropathy & dystonia...so it was hard to figure our what was organic and what was not. We still don't know.
This video was so heart felt and it made me think about my own emotional state at this time. Thank you so much for your videos and for letting us in to your FND journey.
We are so simalar I have created a bubble at my home away from society I hate going into public explaining to strangers my condition , me and my son are working on a 1987 bus for him to do the van life when he moves out . I go to things I really want to do but if its not something i want i dont put my self through it I surround myself with the right people and I really dive into my hippie roots of loving everything and every moment it keeps me from being jaded of having to live with the curse of fnd . You are not alone. Generally we never fully recover from FND its so sad. I love you
Hi Casey, thank you for sharing your lived experience with FND. I’m from Canada, I’ve had FND for 10 years. In 2013, I was hit by a car and then came down with Strep in the same week. My movement disorder, fatigue, brain fog and issues with processing sensory stimulation…etc began and intensified over a period of months which led to me losing my career and independence. The search for answers was difficult, it took 6 years to get diagnosed with FND. I am active in the FND community and very much admire people like yourself who spread awareness about the condition. It is much appreciated as FND continues to be in a medical blind spot with very few clinicians keeping up to date on the subject. I was wondering who was the physio therapist who helped you improve your gait and balance issues. I’ll try to pass it on to those living in that region. It is very difficult to find clinicians who are aware of our condition so it is nice to hear of a physio who made a notable difference for you. I’m glad to hear your functional seizures are not as frequent but it sounds like you are still dealing with a lot. I found it interesting that you mentioned ASD… I think the issue of neurodivergence is prevalent in the FND community. This is rarely discussed and there are very few clinicians who have any awareness of this important overlap. I’m glad to hear you are focussing on pacing and self care. FND can be very distressing and debilitating so I sincerely hope that with additional time, rest and care, you will benefit from less flare ups. Thank you also for sharing your difficulties in getting approved for disability. Sadly most FND patients get rejected, at least once. It is a brutal process to go through at a time when we are so ill. I went through it some years ago and I wish patients were not put through all of that. They are already dealing with so much. Take care
Hi Susi! Thanks for sharing your story. So lovely that you are active in the community. I live in terrace bc and the clinic I go to is called Cedar River Physio. I actually don’t remember my drs name but I’ve seen many there and they are all good 😊 thank you for watching, best wishes to you
Thank you for sharing your personal journey 🙏 this is the diagnosis I'm likely to have very soon but has taken three years since symptom onset. So frustrating 😫 slow steps is what I find helps, but every day is a struggle 😢
Thank you so much for sharing. I'm watching all your videos now. I have asd and fnd and except for the Marijuana story, everything you're saying is my symptoms! It's so validating to find someone with the same symptoms. I got diagnosed about 2 years ago in the ER.
Thank you Cassey. For the honesty, the cornerstones you've reached in this condition and also your journey to this point. You've uplifted me with the idea of physio and many of your feelings and experiences made tears prick in my eyes because I could relate so much. I can't imagine how vulnerable you must feel after recording and posting this so I wanted to make sure that you knew that you really made a difference to someone today. 🎉 Keep it up! I'm following you on Insta now and it's so joyous to see you in a tiny home again!See you in the next video, we all love you too! ❤
Hi Cassey. Have you ever considered doing illustrations for a children's picture book? I have commented on some of your previous videos regarding treating FND, and we are doing similar activities towards healing. I've been writing stories for children and your artwork has me intrigued. Take care.
Thanks for sharing openly. I think repressing emotions (which happens unconsciously, so it's hard to recognise) can be a big factor in these kinds of conditions. I don't know if you have heard of tension myositis syndrome (TMS) and mind-body disorders, but FND seems similar to that. Looking into TMS and people like John Sarno (who discovered a lot of back pain is due to repressed emotions, rather than structural issues) and Howard Schubiner could help. They sometimes talk about things in the context of back pain, but the principles are the same if symptoms are originating from emotions and the brain rather than structural damage.
I have FND I have tics and movements 24 hrs a day its so bad fnd sucks I walk really bad have bad gait disorder,brain fog , I miss the old me so bad I can relate
Hi Cassey, you are so so brave for sharing your story and you should be very proud of yourself for not giving up 🎉 I’m a 49 yr old woman going through peri-menopause who first was diagnosed with Stiff Person Syndrome last April but my diagnosis was changed to FND by a second neurologist. I think I have mentioned this before since I have commented on some of your videos before. I would like to ask you if you ever had stiffness on your lower back? That has been my biggest symptom and weakness on my legs and they have done all the MRI’s possible, blood work, etc. etc. so I’m still looking for answers. It’s so debilitating. Thank you and take care dear ❤
Hi there 💗 thank you for your kind words. I have experienced pain in my lower back and legs but I would compare it more to nerve pain 💕 have you seen a physiotherapist? That could maybe help. I hope you can find some ease.
Not the same thing as not the same lobes in the brain that are having "little seizures" "petite mal" "absence" "partial" or "Complex partial" seizures. Mine occure in both the right and left temporal lobes. Although really bad ones have crossed over and caused me to pass out or have a drop/tonic seizure twice. Down like a tree. Not sure how long I was out or what was happening during the time I was out as I was alone. Just know where I was standing and where I woke up. My form of epilepsy is called "Temporal Lobe Epilepsy" or TLE. Went through the gammet of meds, neurologists, psychiatrist and testing. The one medication that has the least side effects and is the most effective is Keppra. No studdering, no tiredness, no sexual disfunction. Super important is to take a daily dose of Vitamine D3 while taking this medication. Keppra can and often does cause what is called, Keppra rage. Vitamin D3 daily works to stop that bit of loveliness completely. Insomnia is also a side effect and a nightly dose of Melatonin 10 mg, works.
I wrote a whole comment and I don’t think it worked 🙃 I was diagnosed 2 years ago and was completely paralysed. I couldn’t even smile or move my eyebrows, also lost function of my bladder and bowel (still struggle with bladder). I’m about 60% who I was. My understanding of this disorder is it’s a neurological disorder characterised by abnormal brain activity and function. It’s not a mental illness. When we think about it, stroke, heart attack etc can be triggered by stress, so why do we treat FND patients so badly? Mine was triggered by a virus. I’m also Autistic with ADHD. FND patients deserve to be treated with respect and understanding. Yes, many people recover, but for some of us this is disabling despite our best efforts (I am also guilty of the push!) The suggestion patients prolong symptoms for some kind of social benefit is absolutely insulting (anyone with this condition will tell you the sacrifices and struggles far outweigh any so called benefit!) and we wouldn’t make these suggestions with other disabilities. Sending you well wishes for the next part of your journey. Thank you for sharing ❤
After 7 years of neurological issues I’ve recently been diagnosed with FND/FMD. It has been a whirlwind of emotions. Having so many tests and seeing so many doctors has been exhausting. I don’t seem to have a mental health component to my disorder but not everyone does. The worst part of my symptoms were partial paralysis, unable to stand or walk, full body muscle weakness from head to toe including my vocal muscles. I developed chronic hiccups that lasted for 3 years!! Muscle spasms, seizure “like” activity and a slew of other symptoms. I lost my independence and I’m no longer able to drive or live on my own. FND is real. It’s not a person making up weird symptoms. It’s where your neural connections misfire and your normal brain signals are interrupted. It’s a lifelong disorder with ups and downs. All you can do is to keep trying to get better. Don’t give up. There’s always hope❤Sending my love and support to anyone struggling with this condition. Xo
WoW chronic hiccups! I’ve never heard of that one. Thank you for sharing your story. We are all in this together ❤️
@@casseyklie Lol yup they average about 10-50+ a day for 3 years! Luckily in the past few months they’ve tapered down quite a bit but they were pretty relentless. I hope you’re doing well and I appreciate the videos you’ve made sharing your experience 😊
Thought I'd leave a second message. I just got to the end of the video and wanted to say I'm so so sorry this happened to you. You're coping so well and I'm so glad that you've recognised how to take care of yourself and are learning how to give yourself the love you need and deserve. I find any stress makes me worse and like you, I'm learning my stressors and learning not to be so hard on myself or my body. Thank you and take good care of yourself. It helps to know we are not alone.
Thank you for your kind words ❤️
Hi I am newly diagnosed and waiting to start treatment....I have watched some of your videos. Thank you Meghan
Thanks for watching!
Hi Cassey, I relate to so much in your video. It's been a year since my FND diagnosis. I'm in a similar spot to you in healing- physically, mentally & emotionally. I'm glad you have supportive people around you because the healing you're (we're) doing is wildly challenging. I've no idea what my future looks like physically, but my heart and mind are healing & strengthening, and I hope that will help my messed up movements and cognition to improve as well. Thanks for sharing your story.
Thank you for the comments, I wish you the best of luck in your recovery ❤️
I have been diegnosed with FND for only 6 months & i really appreciate people like yourself that post on TH-cam about your jorney with FND , you may not no it at the time you post but you have helped me & others with it a lot We are the only ones who know about it & we all feel so lonely with it so we all need to share
💗
Hello Cassey. Thank you so much for your videos. They really help. I relate so much to your symptoms and your self help tools. I don't have the diagnosis but I have a bunch of psychiatric labels. FND makes a lot of sense to me.
Sending lots of hugs. I know exactly how you feel. I see my daughter's struggles every day with all her complex needs. Hang in there ok. You are so strong with your journey in life and acceptance 😢
Thank you for the encouragement ❤️
Thank you very much for your help even if you don't know that you are I can't put my feet together at all or anything with my hands without a lot of concentration it's very tiring. I've been diagnosed with FND thank you again for your help
Thanks for watching!
Thanks fot being brave enough to show what you go through. It is comforting to know I am not alone in knowing how terrifying and disabling FND can be. I have also had all of the symptoms you have shown and without the support of my wife and my son I would not have even been able to function. It is great to see you have been doing well with your recovery and I wish you all the best.
I’m glad to hear you have family support. Sending lots of love and strength for your healing
@@casseyklie Thanks Cassey it warms the heart and gave my wife a big smile after I told her. My family and I sends best wishes to you on your journey.
Hi again. I want to thank you so much for opening up and telling us your feelings. I know that can be very hard. I am also on the spectrum and have FND. This last month my seizure count has risen again and it makes me nervous. I am lucky I am in therapy and have a very supportive family and like you I am immersed in arts of all kind especially painting. This illness can really make you feel so alone and yet also not wanting to be around other people. I definitely have an issue with being out in public because of seizures as well. Some days can be so much more rough than others but I'm glad that I was able to find you on TH-cam and know that I am not alone. Hugs from your friend in Alberta. Xx
Thank you for sharing, sending love ❤️
I've been an a challenging journey myself, thank you for being so brave and sharing yours. My therapist recently had me read "Healing Back Pain" by John E. Sarno. It's not necessarily for back pain, it's more about the power of mind & emotions. (I listened to the audio book version in 2 days and found a link to a movie it references which is so good, I'll look for it for you.) You've gone through trauma and it's manifesting in your body. This book suggests once you recognize certain things, you can reclaim parts of your body that used to work just fine. I had to surrender to believing in this book, which was the hardest part. But I did get some healing and do function better more days than not. It's challenging because I don't necessarily believe all of this book but accepting the concept may help your brain jump back to the healthy neuro-loops you used as a normally functional person before all of this started. There healthy neuro loops are still in your brain, you need to get back on the right track. Art therapy is awesome. Learning something new, all the time, it key to keep your brain healthy. Zentangle is my favorite at the moment but it always changes. I'm going to look for the movie link now.
Wow thanks for the share! I’ll have to read that book
@@casseyklie I wasn't 'magically' cured, but I am less symptomatic. I also wouldn't be surprised if you have something else beyond FND. I have hEDS, dysautonomia, neuropathy & dystonia...so it was hard to figure our what was organic and what was not. We still don't know.
This video was so heart felt and it made me think about my own emotional state at this time. Thank you so much for your videos and for letting us in to your FND journey.
Thank you for watching🙏
We are so simalar I have created a bubble at my home away from society I hate going into public explaining to strangers my condition , me and my son are working on a 1987 bus for him to do the van life when he moves out . I go to things I really want to do but if its not something i want i dont put my self through it I surround myself with the right people and I really dive into my hippie roots of loving everything and every moment it keeps me from being jaded of having to live with the curse of fnd . You are not alone. Generally we never fully recover from FND its so sad. I love you
Thanks for sharing. Woohoo on van life!
This video really touched my heart. I hate to see you struggle. BUT You have come so far in your personal growth. I hope you feel proud of yourself! 🥰
Thanks for the love ☺️
Hi Casey, thank you for sharing your lived experience with FND. I’m from Canada, I’ve had FND for 10 years. In 2013, I was hit by a car and then came down with Strep in the same week. My movement disorder, fatigue, brain fog and issues with processing sensory stimulation…etc began and intensified over a period of months which led to me losing my career and independence. The search for answers was difficult, it took 6 years to get diagnosed with FND. I am active in the FND community and very much admire people like yourself who spread awareness about the condition. It is much appreciated as FND continues to be in a medical blind spot with very few clinicians keeping up to date on the subject.
I was wondering who was the physio therapist who helped you improve your gait and balance issues. I’ll try to pass it on to those living in that region. It is very difficult to find clinicians who are aware of our condition so it is nice to hear of a physio who made a notable difference for you.
I’m glad to hear your functional seizures are not as frequent but it sounds like you are still dealing with a lot. I found it interesting that you mentioned ASD… I think the issue of neurodivergence is prevalent in the FND community. This is rarely discussed and there are very few clinicians who have any awareness of this important overlap.
I’m glad to hear you are focussing on pacing and self care. FND can be very distressing and debilitating so I sincerely hope that with additional time, rest and care, you will benefit from less flare ups.
Thank you also for sharing your difficulties in getting approved for disability. Sadly most FND patients get rejected, at least once. It is a brutal process to go through at a time when we are so ill. I went through it some years ago and I wish patients were not put through all of that. They are already dealing with so much.
Take care
Hi Susi! Thanks for sharing your story. So lovely that you are active in the community. I live in terrace bc and the clinic I go to is called Cedar River Physio. I actually don’t remember my drs name but I’ve seen many there and they are all good 😊 thank you for watching, best wishes to you
Thank you for sharing your personal journey 🙏 this is the diagnosis I'm likely to have very soon but has taken three years since symptom onset. So frustrating 😫 slow steps is what I find helps, but every day is a struggle 😢
Thank you for watching. Im sorry that you have to go through this as well but you are not alone and you are strong! 💕
Thank you so much for sharing. I'm watching all your videos now. I have asd and fnd and except for the Marijuana story, everything you're saying is my symptoms! It's so validating to find someone with the same symptoms. I got diagnosed about 2 years ago in the ER.
Thank you for watching and your support, wishing you well 💗
Thank you Cassey. For the honesty, the cornerstones you've reached in this condition and also your journey to this point. You've uplifted me with the idea of physio and many of your feelings and experiences made tears prick in my eyes because I could relate so much.
I can't imagine how vulnerable you must feel after recording and posting this so I wanted to make sure that you knew that you really made a difference to someone today. 🎉 Keep it up! I'm following you on Insta now and it's so joyous to see you in a tiny home again!See you in the next video, we all love you too! ❤
You are just the sweetest!! Thank you for those lovely lovely words. And thanks for connecting on Instagram, I appreciate it. So much love ❤️
Hi Cassey. Have you ever considered doing illustrations for a children's picture book? I have commented on some of your previous videos regarding treating FND, and we are doing similar activities towards healing. I've been writing stories for children and your artwork has me intrigued. Take care.
Thanks for watching! I haven’t considered illustration, but it could be a fun idea ☺️
Thats interesting about the left leg. My symptoms all started left side. I was working and was literally dragging left leg not long into a shift.
Thanks for sharing openly. I think repressing emotions (which happens unconsciously, so it's hard to recognise) can be a big factor in these kinds of conditions. I don't know if you have heard of tension myositis syndrome (TMS) and mind-body disorders, but FND seems similar to that. Looking into TMS and people like John Sarno (who discovered a lot of back pain is due to repressed emotions, rather than structural issues) and Howard Schubiner could help. They sometimes talk about things in the context of back pain, but the principles are the same if symptoms are originating from emotions and the brain rather than structural damage.
Thank you for sharing! 💕
I have FND I have tics and movements 24 hrs a day its so bad fnd sucks I walk really bad have bad gait disorder,brain fog , I miss the old me so bad I can relate
Hi Cassey, you are so so brave for sharing your story and you should be very proud of yourself for not giving up 🎉
I’m a 49 yr old woman going through peri-menopause who first was diagnosed with Stiff Person Syndrome last April but my diagnosis was changed to FND by a second neurologist. I think I have mentioned this before since I have commented on some of your videos before. I would like to ask you if you ever had stiffness on your lower back? That has been my biggest symptom and weakness on my legs and they have done all the MRI’s possible, blood work, etc. etc. so I’m still looking for answers. It’s so debilitating. Thank you and take care dear ❤
Hi there 💗 thank you for your kind words. I have experienced pain in my lower back and legs but I would compare it more to nerve pain 💕 have you seen a physiotherapist? That could maybe help. I hope you can find some ease.
Ty for sharing. I got dx in july and it's been such a life changing experience
Thanks for watching
You should never have to apologise for how you looking beautiful*
Not the same thing as not the same lobes in the brain that are having "little seizures" "petite mal" "absence" "partial" or "Complex partial" seizures. Mine occure in both the right and left temporal lobes. Although really bad ones have crossed over and caused me to pass out or have a drop/tonic seizure twice. Down like a tree. Not sure how long I was out or what was happening during the time I was out as I was alone. Just know where I was standing and where I woke up. My form of epilepsy is called "Temporal Lobe Epilepsy" or TLE. Went through the gammet of meds, neurologists, psychiatrist and testing. The one medication that has the least side effects and is the most effective is Keppra. No studdering, no tiredness, no sexual disfunction. Super important is to take a daily dose of Vitamine D3 while taking this medication. Keppra can and often does cause what is called, Keppra rage. Vitamin D3 daily works to stop that bit of loveliness completely. Insomnia is also a side effect and a nightly dose of Melatonin 10 mg, works.
I wrote a whole comment and I don’t think it worked 🙃
I was diagnosed 2 years ago and was completely paralysed. I couldn’t even smile or move my eyebrows, also lost function of my bladder and bowel (still struggle with bladder). I’m about 60% who I was.
My understanding of this disorder is it’s a neurological disorder characterised by abnormal brain activity and function. It’s not a mental illness.
When we think about it, stroke, heart attack etc can be triggered by stress, so why do we treat FND patients so badly? Mine was triggered by a virus.
I’m also Autistic with ADHD.
FND patients deserve to be treated with respect and understanding. Yes, many people recover, but for some of us this is disabling despite our best efforts (I am also guilty of the push!)
The suggestion patients prolong symptoms for some kind of social benefit is absolutely insulting (anyone with this condition will tell you the sacrifices and struggles far outweigh any so called benefit!) and we wouldn’t make these suggestions with other disabilities.
Sending you well wishes for the next part of your journey. Thank you for sharing ❤
What a powerful share. Thank you so much 💕 sending my love your way!
❤
Did you suffer from fatigue ??
Your microphone is dropping in and out.
❤