What is normal, My normal changes every day. Sometimes i feel more than normal, sometimes I just want to slide into oblivion and disappear. When my speech catches, I stutter, I lose words, I have a seizure and/or a blackout, I am so bloody scared, sometimes terrified of how I no longer have control over my body or my brain. I can still ride my motorbike so for me to get out I feel sort of free for a while. I have a disability on top of this FND, I have a spinal injury so I am permanently on sticks and in a wheelchair on bad days, I have an acquired brain injury as well. I would very much like to meet others who have FND so I can at least talk to someone else who knows what being in this head space is like. Thank you FunctionaLenny, I do so enjoy watching your blogs, Thank you.
I thought I accepted it and moved on but then I still cry sometimes because I'm suffering mostly in silence because I don't want to remind my husband and family how pitiful and useless I am. I'm a burden and my pride has taken a huge hit. I wanted to work part time somewhere but I get so weak that I need to be near a bed. I can only do minimal stuff but I have no value and it hurts me so much. It's been 2 and a half years and they told me the same thing, but I have never recovered. And when medical tests don't show that your suffering is real, nobody really believes you. So since I can't accept this, I just try to distract myself. Distract distract distract and don't think about it
I still think it’s bull 💩. For 37 years I had ataxia (which caused the beginnings of walking troubles) and action tremors in my hands. It got worse and from puberty to menopause (13-49) I went from having trouble walking downhill and having action tremors in my hands and arms to being in a wheelchair. I was diagnosed with progressive myoclonic epilepsy. In my late 40s I went to a neurologist I had years ago because I had mouth pain and nobody could figure it out. I just got blood results with a note saying “It appears you have Functional Movement Disorder. Go to neurosymptoms.org and find out about it.” So many symptoms were listed that it seems if they don’t know what is wrong they toss you in a group with a variety of symptoms. Mouth pain wasn’t listed 🤷♀️ I went back to talk to him and he told me to see a psychologist and that was it. I thought it was dumb and so did psychologist. No trauma, anxiety, depression...only feeling was anger. Did a week long video EEG and had regular epileptic seizures when they tried to ween me off meds. So the seizures are from epilepsy and under control with meds. Neurologist wanted to show NES. Joke on him. I also have a mitochondrial DNA mutation related to ataxia. I went through a week long PT-OT outpatient program at Mayo Clinic and they blamed my not improving on not trying. I fell the first session and apparently it was because I wasn’t doing diaphragmatic breathing and muscle relaxation right. After all of that I have gone back to not accepting it and just using the progressive myoclonic epilepsy diagnosis. My mom still thinks if I try hard enough I will walk again because the website says you can get better 🙄 Toss me in the 😡 group. One neurologist out of many isn’t going to change it. Just gave mom false hope. Not pissed at symptoms as much as I am at that neurologist 😂
I was just officially diagnosed one week ago, and I had never even heard of it until a month ago. My acceptance seems to be directly proportional to educating myself on FND, but it’s a slow process.
I struggled with the this term “accepting your diagnosis" too. It did feel initially like either implying it's psychosomatic or there is just nothing we can do. I was afraid that if I say I have fnd that would somehow be inviting it to stay. But at same time knowing why it is happening has been a relief of sorts. So I can accept the diagnosis that this is why this is happening so we can find a way to improve. Having to live in the moment and accept this is what happening right now instead of getting upset over things I can't do right now because my body still needs time. Appreciating what is good in my life and remaining hopeful. Acceptance so much more complex than it implies 😂 I guess like managing symptoms, it's a work in progress.
I accept mine. It’s so important to make this your friend. If that is acceptance then I’m there❤️
What is normal, My normal changes every day. Sometimes i feel more than normal, sometimes I just want to slide into oblivion and disappear. When my speech catches, I stutter, I lose words, I have a seizure and/or a blackout, I am so bloody scared, sometimes terrified of how I no longer have control over my body or my brain. I can still ride my motorbike so for me to get out I feel sort of free for a while.
I have a disability on top of this FND, I have a spinal injury so I am permanently on sticks and in a wheelchair on bad days, I have an acquired brain injury as well. I would very much like to meet others who have FND so I can at least talk to someone else who knows what being in this head space is like.
Thank you FunctionaLenny, I do so enjoy watching your blogs, Thank you.
Absolutely 100% agree with what you’re saying. It’s a continual process as there’s so many impacts of fnd. Xoxo
I agree that acceptance is one of the hardest parts
I thought I accepted it and moved on but then I still cry sometimes because I'm suffering mostly in silence because I don't want to remind my husband and family how pitiful and useless I am. I'm a burden and my pride has taken a huge hit. I wanted to work part time somewhere but I get so weak that I need to be near a bed. I can only do minimal stuff but I have no value and it hurts me so much. It's been 2 and a half years and they told me the same thing, but I have never recovered. And when medical tests don't show that your suffering is real, nobody really believes you. So since I can't accept this, I just try to distract myself. Distract distract distract and don't think about it
I still think it’s bull 💩. For 37 years I had ataxia (which caused the beginnings of walking troubles) and action tremors in my hands. It got worse and from puberty to menopause (13-49) I went from having trouble walking downhill and having action tremors in my hands and arms to being in a wheelchair. I was diagnosed with progressive myoclonic epilepsy.
In my late 40s I went to a neurologist I had years ago because I had mouth pain and nobody could figure it out. I just got blood results with a note saying “It appears you have Functional Movement Disorder. Go to neurosymptoms.org and find out about it.” So many symptoms were listed that it seems if they don’t know what is wrong they toss you in a group with a variety of symptoms. Mouth pain wasn’t listed 🤷♀️
I went back to talk to him and he told me to see a psychologist and that was it. I thought it was dumb and so did psychologist. No trauma, anxiety, depression...only feeling was anger.
Did a week long video EEG and had regular epileptic seizures when they tried to ween me off meds. So the seizures are from epilepsy and under control with meds. Neurologist wanted to show NES. Joke on him. I also have a mitochondrial DNA mutation related to ataxia. I went through a week long PT-OT outpatient program at Mayo Clinic and they blamed my not improving on not trying. I fell the first session and apparently it was because I wasn’t doing diaphragmatic breathing and muscle relaxation right.
After all of that I have gone back to not accepting it and just using the progressive myoclonic epilepsy diagnosis. My mom still thinks if I try hard enough I will walk again because the website says you can get better 🙄 Toss me in the 😡 group. One neurologist out of many isn’t going to change it. Just gave mom false hope. Not pissed at symptoms as much as I am at that neurologist 😂
100% acceptance
I was just officially diagnosed one week ago, and I had never even heard of it until a month ago. My acceptance seems to be directly proportional to educating myself on FND, but it’s a slow process.
You should go on Special Books by Special Kids. It would highlight the cause and increase understanding
I struggled with the this term “accepting your diagnosis" too. It did feel initially like either implying it's psychosomatic or there is just nothing we can do. I was afraid that if I say I have fnd that would somehow be inviting it to stay. But at same time knowing why it is happening has been a relief of sorts. So I can accept the diagnosis that this is why this is happening so we can find a way to improve. Having to live in the moment and accept this is what happening right now instead of getting upset over things I can't do right now because my body still needs time. Appreciating what is good in my life and remaining hopeful. Acceptance so much more complex than it implies 😂 I guess like managing symptoms, it's a work in progress.
is this a psychatric specialty or neuro cause i cant find a specialist
Hi it's normally a neurologist who diagnoses and refers to other treatment