I have the same problem but medical system is not trained to help. I applied for disability but their experts don't understand how difficult FND is. We all struggle so much without any understanding by professionals. 😢😢😢
Thx. I did have a caregiver. Unfortunately that caregiver threw me away like garbage because they did not believe my FND diagnosis. There is so much stigma around it. They blame you for what you do, what you don’t do and for their lack of understanding. It’s a vicious cycle.
I hear ya Brock. Two and a half years living with this thing going to several different hospitals and all they did was MRIs and sent me home. They thought I was crazy but I knew something had to be wrong because nobody could explain the symptoms and the seizures that I had. I was finally able to get an appointment at the Mayo Clinic and stayed overnight and although they didn’t capture anything on the EEG, they reviewed all of my medical records from all the hospitals, and now a “team” of neurologists are working with me to make a treatment plan. That day I was diagnosed with FND and so the journey continues. Thanks for sharing your story. I actually had two seizures today and missed breakfast with a friend of mine at the IHOP. Fortunately, it started in the parking lot before going into the restaurant so I didn’t have to be embarrassed. It’s Veterans Day today and I am a US veteran. I’m trying to be hopeful but man it is hard…
My husband has been having with seizures for 15 years and nobody has ever tried to help him with fnd my husband has been staying away from doctors because he's frustrated embarrassed and never feels good enough to get out of bed. My children and I beg him to keep trying and he shuts us down. I have heard him say numerous times that he can't do this anymore. Then I stumbled upon somebody's post on Facebook mentioning functional neurological disorder and I started watching your videos. I feel like every video you share is what my husband goes through and I have so much sympathy for you. I don't even know where to start to get him more help. The last neurologist cleared him after having another MRI EEG blood work. Why didn't he ever mention this to us? My children have grown up watching my husband fall downstairs and have seizures over and over and he still continues to feel this way. He definitely has chronic pain and is dealing with a shoulder injury and I can't even convince him to go take care of it because he's always down and says someday when he feels better he'll go to the doctor. I'm going to try to show him your videos.I feel like he's giving up. Thank you for letting me vent to finally someone else that lives his life.
Medical Paramedics, Fire, and Police are not train in this... and they thought I was faking seizures because it didn't follow typical seizures. They pinched me, looked at my pupils, and etc. And I couldn't talk and screamed when they were f***ing around with my arm that was contracted. I remember the cop opened the ambulance and ask if he needed to intervene. I am so scared that I walk drunk and slur my speech in episodes that if I call 911 or have a major relapse episode. Instead of going to the hospital I end up in this messed up story of going to jail because they thought I was drunk, I can't communicate, and etc. This FND has been so crazy messed up all ready!
Man, I don't know what the answer is, but there's gotta be some possible process to put in place for folks in such situations to get an ambulance there. I dunno, maybe "If you are unable to speak and are in medical trouble, press a number on your phone three times in a row" (a phone version of blink twice for yes). There must be instances when stroke victims, for example, can't articulate when help is needed.
Staying Strong is beyond important with Conversion Disorder. I just made a video about Conversion Disorder on my channel. Just know all help is good help when it comes to healing.
I do have a service animal. He is a Labrador named Cooper. I was not allowed to take him with me. I haven’t had my service animal in 262 days. I miss him.
Hello, my name is Heather. I’ve watched your videos, and I am very touched by them. I am disabled and in a wheelchair. I’d love to get to know you online, and possibly become friends.
I have the same problem but medical system is not trained to help. I applied for disability but their experts don't understand how difficult FND is. We all struggle so much without any understanding by professionals. 😢😢😢
I am absolutely astounded that your hospital sent you home so soon. You certainly have been through The wringer. You need a carer. God bless you.
Thx. I did have a caregiver. Unfortunately that caregiver threw me away like garbage because they did not believe my FND diagnosis. There is so much stigma around it. They blame you for what you do, what you don’t do and for their lack of understanding. It’s a vicious cycle.
thanks for the encouraging words. dealing with this for 20+yrs. choose your battles, stay happy
I hear ya Brock. Two and a half years living with this thing going to several different hospitals and all they did was MRIs and sent me home. They thought I was crazy but I knew something had to be wrong because nobody could explain the symptoms and the seizures that I had. I was finally able to get an appointment at the
Mayo Clinic and stayed overnight and although they didn’t capture anything on the EEG, they reviewed all of my medical records from all the hospitals, and now a “team” of neurologists are working with me to make a treatment plan. That day I was diagnosed with FND and so the journey continues. Thanks for sharing your story. I actually had two seizures today and missed breakfast with a friend of mine at the IHOP. Fortunately, it started in the parking lot before going into the restaurant so I didn’t have to be embarrassed. It’s Veterans Day today and I am a US veteran. I’m trying to be hopeful but man it is hard…
I went through years of diagnosis and ultimately went to the Mayo Clinic in AZ to be diagnosed. It’s been hell but I’ll keep fighting just like you.
My husband has been having with seizures for 15 years and nobody has ever tried to help him with fnd my husband has been staying away from doctors because he's frustrated embarrassed and never feels good enough to get out of bed. My children and I beg him to keep trying and he shuts us down. I have heard him say numerous times that he can't do this anymore. Then I stumbled upon somebody's post on Facebook mentioning functional neurological disorder and I started watching your videos. I feel like every video you share is what my husband goes through and I have so much sympathy for you. I don't even know where to start to get him more help. The last neurologist cleared him after having another MRI EEG blood work. Why didn't he ever mention this to us? My children have grown up watching my husband fall downstairs and have seizures over and over and he still continues to feel this way. He definitely has chronic pain and is dealing with a shoulder injury and I can't even convince him to go take care of it because he's always down and says someday when he feels better he'll go to the doctor. I'm going to try to show him your videos.I feel like he's giving up. Thank you for letting me vent to finally someone else that lives his life.
Medical Paramedics, Fire, and Police are not train in this... and they thought I was faking seizures because it didn't follow typical seizures. They pinched me, looked at my pupils, and etc. And I couldn't talk and screamed when they were f***ing around with my arm that was contracted. I remember the cop opened the ambulance and ask if he needed to intervene. I am so scared that I walk drunk and slur my speech in episodes that if I call 911 or have a major relapse episode. Instead of going to the hospital I end up in this messed up story of going to jail because they thought I was drunk, I can't communicate, and etc. This FND has been so crazy messed up all ready!
FND almost killed me in Oct 2023. Thank you for sharing. We are all survivors!
I’m glad you made it. Keep fighting.
Man, I don't know what the answer is, but there's gotta be some possible process to put in place for folks in such situations to get an ambulance there. I dunno, maybe "If you are unable to speak and are in medical trouble, press a number on your phone three times in a row" (a phone version of blink twice for yes). There must be instances when stroke victims, for example, can't articulate when help is needed.
Staying Strong is beyond important with Conversion Disorder. I just made a video about Conversion Disorder on my channel. Just know all help is good help when it comes to healing.
Do they treat the anxiety that's causing the problem?
Have you looked into getting a seizure alert dog? Or do you already have one ?
I do have a service animal. He is a Labrador named Cooper. I was not allowed to take him with me. I haven’t had my service animal in 262 days. I miss him.
Hello, my name is Heather. I’ve watched your videos, and I am very touched by them. I am disabled and in a wheelchair. I’d love to get to know you online, and possibly become friends.
Your buddy is so cool.
What type of FND? I’ve got Functional Tremors