I’ve had paralysis from the waist down for 2 years on and off with no answers. Finally today after two years of people saying we have no answers for you I was finally diagnosed with FND. So much is misunderstood with this disorder so I want to bring awareness to FND patients.
I have complex FND. My story is long. It took me 13 months to recover from partial paralysis. I had intense rehab and lots of family support. I am glad I am not alone with this.
Hi Ma D, I'm glad that you have had support and recovery - well done in sticking with the rehab. You are not alone, awareness is increasing within the medical and health professions and in the general community. Best wishes, Active Rehab.
@@activerehabilitationphysio1047 I was diagnosed with FND in QLD. I wish I'd been referred to your clinic as the 2 physiotherapists I've seen aren't really aware of FND.
It might not be that they don't want to (doctors are often in the business to make money) but rather that they aren't trained to deal with this highly specialized ailment.
@@BPoweredLove Then why don't they try and find the people who specialise in what the patient wants. This is not acceptable as living with an untreated disorder can be very debilitating.
I want to become a doctor one day and find a great treatment for this illness! I suffer from it too and i want to get better. I believe we all will get better!
Many medical professionals don't know what to do. So patient care is zero. I ended up going to hospital with seizures I could not control. What worked before to managed triggers stopped. I saw a neurologist who told me that my mind needs to take control of my body and sent home after seizures were diagnosed as functional only. Go see you psychologist. Patient care is an utter disgrace. I am sick of being treated like a mental case.
I have had this illness for nearly 9 years. I used to be able to walk for miles. But now it's a nightmare even just trying to brush my short hair. This illness is getting really bad for me now. I'm using my electric scooter outside. As I can't walk any distance. One of my neighbours was saying that she doesn't know why I need to use my scooter. As I can walk around my garden. I said to her that she can't see under my skin to my illness
Exactly! I totally relate to your symptoms (I used to be able to go for a run every day, but not anymore) - and sentiments in that people can't see inside you to what's causing you to not be able to walk/function properly etc. This disorder is so crippling 😞
I was diagnosed with FND by my neurologist, Dr Alex Lehn at the Princess Alexandra Hospital, Brisbane, in April 2015. I then commenced treatment with Dr Alex Lehn at the Mater Hospital Brisbane and referred to senior neuro Physiotherapist, Dharsha, at Active Rehabilitation. I relearned automatic movements that my brain and central nervous system had somehow lost. Dharsha's true understanding and training in treating FND movement disorders was pivotal in regaining my automatic movements with manageable exercises and conscious thinking. Her compassion and commitment to patient care, strengthened my resolve to work hard in regaining and strengthening my automatic movements.
Julie Wright You are so lucky to have had her. I watched a webinar with her and she's brilliant. I went through the rehab program at Mayo Clinic and didn't improve much. I think my physical therapist's bad attitude is as much to blame for not improving much as me having it for 37 years. She got mad on Day 1 and when my tremors in my legs didn't improve instead of helping me to my wheelchair she let the tremors increase until the whole table I was leaning on was shaking. I said I'm falling and she just watched. 😡 She was angry the whole week and I saw her twice a day. Praise to Dharsha & congrats to you on recovery. I am using balance exercises I find on TH-cam to do it on my own. Did they stress diaphragmatic breathing in that program?
I have FND. Is it the mater in Newcastle? I went to John hunter and they essentially turned me away. I have 2 paralysed legs and am only just beginning to move my toes on my right side.
This illness is starting to get my left side so very weak. My left leg just drags and my left arm and hand us starting to get really weak and sore. I'm never going to get used to this evil illness. Some days all I want to do is sleep. And other days I'm in really bad pain
I have Conversion Disorder (Or FND) myself. I have lost my ability to use my arms, I have lost my ability to see out of my right eye, and I have lost my ability to walk. I sadly am one of the rare cases where it might stick with my for life.
@@lynx873 can i Ask you what you eat? Three months ago i was hospital they was sure i had narcolepsy, like huge paralysis..i start eating keto and i am so much better
@@stellaancimer8505 I usually avoid chicken and meat bcoz I feel nervousness after eat so I mostly eat vegetables like french fries,boil potatoes and more vegi dishes
I fractured my bk n now have fnd i cant get the right support from nhs as my neurologist diagnosed it n discharged me im feeling alone now these you tube are brilliant thank you
Hi Sharon, sorry to hear you are having a difficult time, but glad if we can offer some small support. If you haven't already, check out the organisation FND Hope - they are a support group for patients. Our physiotherapist Dharsha, along with others in her team and in the community of professionals have recorded webinars available on the site. Best wishes from Active Rehab.
Unfortunately in the UK its a post code lottery regarding GP's and local hospitals understanding and giving appropriate therapy for people with FND. The good news is, there's a huge amount of professional education getting out there.
My neurologist thinks i might have this then my cwk mri showed abnormalties now i can under go 3 more mri’s brain another cwk and twk 💀 i have alot of real neurological problems already like i had a brain bleed at birth which caused me to have cp on my left side i have a shit load of other conditions so i would happily sign for FND but no my mri showed abnormalities i will know what it is 23rd september i hope FND bc the other thing would probably be MS
Functional Neurological symptom disorder aka Conversion Disorder are non-painful, presenting symptom is a loss of function (motor or sensory). This is unlike Somatic Symptom Disorder which will have predominant pain
I’ve had paralysis from the waist down for 2 years on and off with no answers. Finally today after two years of people saying we have no answers for you I was finally diagnosed with FND. So much is misunderstood with this disorder so I want to bring awareness to FND patients.
I have complex FND. My story is long. It took me 13 months to recover from partial paralysis. I had intense rehab and lots of family support. I am glad I am not alone with this.
Hi Ma D, I'm glad that you have had support and recovery - well done in sticking with the rehab. You are not alone, awareness is increasing within the medical and health professions and in the general community. Best wishes, Active Rehab.
Did you experience a traumatic physical or psychological event prior to developing FND?
@@activerehabilitationphysio1047 I was diagnosed with FND in QLD. I wish I'd been referred to your clinic as the 2 physiotherapists I've seen aren't really aware of FND.
You aren’t alone, I was diagnosed with FND 2 weeks ago and I also suffer from paralysis, but on one side of my body
I'm so tired of being turned away by doctors . This is very real and doctors don't want to address it
It might not be that they don't want to (doctors are often in the business to make money) but rather that they aren't trained to deal with this highly specialized ailment.
@@BPoweredLove Then why don't they try and find the people who specialise in what the patient wants. This is not acceptable as living with an untreated disorder can be very debilitating.
Joy Mechell hey do you suffer from this!
I want to become a doctor one day and find a great treatment for this illness! I suffer from it too and i want to get better. I believe we all will get better!
Many medical professionals don't know what to do. So patient care is zero. I ended up going to hospital with seizures I could not control. What worked before to managed triggers stopped. I saw a neurologist who told me that my mind needs to take control of my body and sent home after seizures were diagnosed as functional only. Go see you psychologist. Patient care is an utter disgrace. I am sick of being treated like a mental case.
I have had this illness for nearly 9 years. I used to be able to walk for miles. But now it's a nightmare even just trying to brush my short hair. This illness is getting really bad for me now. I'm using my electric scooter outside. As I can't walk any distance. One of my neighbours was saying that she doesn't know why I need to use my scooter. As I can walk around my garden. I said to her that she can't see under my skin to my illness
Exactly! I totally relate to your symptoms (I used to be able to go for a run every day, but not anymore) - and sentiments in that people can't see inside you to what's causing you to not be able to walk/function properly etc. This disorder is so crippling 😞
I was diagnosed with FND by my neurologist, Dr Alex Lehn at the Princess Alexandra Hospital, Brisbane, in April 2015. I then commenced treatment with Dr Alex Lehn at the Mater Hospital Brisbane and referred to senior neuro Physiotherapist, Dharsha, at Active Rehabilitation. I relearned automatic movements that my brain and central nervous system had somehow lost. Dharsha's true understanding and training in treating FND movement disorders was pivotal in regaining my automatic movements with manageable exercises and conscious thinking. Her compassion and commitment to patient care, strengthened my resolve to work hard in regaining and strengthening my automatic movements.
Julie Wright You are so lucky to have had her. I watched a webinar with her and she's brilliant. I went through the rehab program at Mayo Clinic and didn't improve much. I think my physical therapist's bad attitude is as much to blame for not improving much as me having it for 37 years. She got mad on Day 1 and when my tremors in my legs didn't improve instead of helping me to my wheelchair she let the tremors increase until the whole table I was leaning on was shaking. I said I'm falling and she just watched. 😡 She was angry the whole week and I saw her twice a day. Praise to Dharsha & congrats to you on recovery. I am using balance exercises I find on TH-cam to do it on my own. Did they stress diaphragmatic breathing in that program?
Great story! Thanks for spreading FND awareness.
Wow this exactly what my kids mother going through
I have FND. Is it the mater in Newcastle?
I went to John hunter and they essentially turned me away. I have 2 paralysed legs and am only just beginning to move my toes on my right side.
This illness is starting to get my left side so very weak. My left leg just drags and my left arm and hand us starting to get really weak and sore. I'm never going to get used to this evil illness. Some days all I want to do is sleep. And other days I'm in really bad pain
wow. I have an FND TH-cam channel This is great awareness!!
I have Conversion Disorder (Or FND) myself. I have lost my ability to use my arms, I have lost my ability to see out of my right eye, and I have lost my ability to walk. I sadly am one of the rare cases where it might stick with my for life.
I'm so blessed to have recovered from my partial paralization
How Plzz tell me I want to recovered
@@lynx873 did you heal
@@stellaancimer8505 no but it keep spreading to my little finger and ring finger my hand feel so heavy 😢
@@lynx873 can i Ask you what you eat? Three months ago i was hospital they was sure i had narcolepsy, like huge paralysis..i start eating keto and i am so much better
@@stellaancimer8505 I usually avoid chicken and meat bcoz I feel nervousness after eat so I mostly eat vegetables like french fries,boil potatoes and more vegi dishes
Food really helps the healing
For me it was carnivore
All the best
Did she actually get a brain scan and lumber puncture to rule out MS?
I fractured my bk n now have fnd i cant get the right support from nhs as my neurologist diagnosed it n discharged me im feeling alone now these you tube are brilliant thank you
Hi Sharon, sorry to hear you are having a difficult time, but glad if we can offer some small support. If you haven't already, check out the organisation FND Hope - they are a support group for patients. Our physiotherapist Dharsha, along with others in her team and in the community of professionals have recorded webinars available on the site. Best wishes from Active Rehab.
Unfortunately in the UK its a post code lottery regarding GP's and local hospitals understanding and giving appropriate therapy for people with FND. The good news is, there's a huge amount of professional education getting out there.
It's also very difficult for my wife now caregiver exstrodinair we diagnosis,100% acceptance,transition then Now What?
How is this treated?
I could not recover from my left hemiplegia yet which cause due to brain hammorage please advice it's been 4 yes already I'm hearing it
My neurologist thinks i might have this then my cwk mri showed abnormalties now i can under go 3 more mri’s brain another cwk and twk 💀 i have alot of real neurological problems already like i had a brain bleed at birth which caused me to have cp on my left side i have a shit load of other conditions so i would happily sign for FND but no my mri showed abnormalities i will know what it is 23rd september i hope FND bc the other thing would probably be MS
I also have it as well
I know what FND IS and even though this is real her comment ‘not bad for someone who faking life in a wheel chair”. Is a little cold and calloused
She says "facing" not "faking" :)
Functional Neurological symptom disorder aka Conversion Disorder are non-painful, presenting symptom is a loss of function (motor or sensory). This is unlike Somatic Symptom Disorder which will have predominant pain