Functional Neurological Disorder
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- Опубликовано: 23 авг 2024
- A video about living with Functional Neurological Disorder or FND for short, something I was diagnosed with in February of 2019. It is a very misunderstood condition, the best of doctors do not seem to understand it. This video talks about my symptoms and hopefully it will help raise awareness for the condition and help anyone out there who also has FND. / 1032873060126131
Precision Massage Clinic is Now Open in Lafayette, IN! I'm Sarah Trueb, CMT. I am a Medical Massage / Manual Therapist. I am on a mission to help people with FND! I have been dealing with FND myself this past year and feeling like things are getting back to normal. I felt like Mental Health & PT/OT/Speech was a joke... never enough and I feel like I wish I could clone myself. I need PT that involved touch. Not just neuromuscular type exercise. Anyways, I am in Lafayette, IN. I feel like this disorder is because we so anxious, had to stay-home, and boom its over... expected get back to life... like normal. So it seems like the new TREND of 2023! I can't get disability benefits, attorneys won'y take my case because of the complexity of this disorder, I look visibly better now, my support can't afford to help financially, and etc.
Thank you for doing this and you are an awesome ambassador!
I also have FND and share some of my own symptoms and information about FND on youtube.
Interesting that there are so many varying symptoms.
Thank you for sharing!
Thank you for sharing your story. I have had two functional strokes. Went to hospital just to be told there is nothing wrong with you. After a few months and many tests they said i had FND. It's just an umbrella term for we don't know what you have. I wish there was more research on this and more awareness, but no one seems to care about this unless you have it. Even my family can't understand how I can walk talk fine one minute and then completely debilitated the next. No one can understand this but us. If the doctors themselves had FND maybe they would try a little harder to cure this
Sunny Staryte I’m very happy you came across my video, they say there is nothing wrong however recent studies have shown how the brain goes wrong in FND patients. My family are the same, I always get told to walk normally when they know that’s not exactly possible for me, if I use a crutch or some kind of aid they wonder why, it’s now at the point where I am too afraid to use any kind of aid because I know the comments I will receive. It is definitely important we raise awareness for FND, we need better care and treatment and hopefully doctors will stop saying there is nothing wrong and hopefully it will be better understood.
Sunny Staryte I totally agree
My dr's are saying either Epilepsy or FND.
You are the first person to mention the insane cramping/pain in the meaty part of hand. That is such a unique symptom. How are yours now?
Ty for making t his video.
Hi there. I haven’t had the pain in that part of my hand for a while now which is good, I noticed it never lasted long, no more than about thirty seconds. How about you? Hope you are all well.
Hi Cameron, I came across your video and I want to share with you my experience. My first episode occurred 21 years ago when I got a partial paralysis of both legs. Just because at that time nobody knows about FND I was treated as I had a psychiatric illness. Luckily (I’m a nurse) I decided to stop the treatment as I knew it wasn’t that the case. After a couple of months of intensive physiotherapy I completely recovered. In the recent past I always had some kind of symptoms but this became worse after I had contracted the covid back in May. I started to have constant headache, back and neck sore, weakness in my left leg, pins and needles, cramps both in legs and arms, bowel and bladder issue, memory loss, and whispering speech. So far I had blood tests, ecg, chest X-ray and brain scan, all came back negative. Since last week my left leg had become worse and my walking is worse. I’m waiting for an MRI of the brain and spine, as they want to be sure there’s nothing underlined. Being a nurse is even worse as you know that there is something wrong even though you haven’t got an official diagnosis. After the MRI my doctor wants to refer me to a neurologist and finally i would get some sort of diagnosis as staying in this limbo is frustrating and stressful. Sorry for outburst but I needed it.
Hi there Luca, thank you for sharing your experience. It definitely sounds challenging. Have you had further tests or any additional symptoms? I find that sometimes the odd new symptom can suddenly occur.
@@EthersCubing Hi Cameron, I was admitted into Royal Victoria Hospital in Belfast and yesterday I was confirmed that’s FND. I’m so released as after so long time at least I can deal with something. By the way when I was admitted I couldn’t almost walk as both legs started having jerking spasm when I’m trying to walk. The plan is getting some physio and see how it goes. My motto: never give up and it always will be
Thank you so much for your honesty and advice for fnd sufferers, it's so reassuring to see a young male being open about this subject, because it's usually females. I want to specifically find people who my son can relate to. Thank you 😊
Thank you for your lovely comment😊, it took a lot for me to do this video, I was doing my best not to get myself worked up. I’m very happy you came across my video and I do hope I was a help to you and your son. How is your son doing with FND?
@@EthersCubing
Hi, we are right at the beginning of the diagnosis, my son had a letter from the hospital, saying that they think that he has fnd. Very vague, and with the lock down situation, he cannot access the GP as normal, we're hoping that he will be referred for some kind of treatment
Jeanettte Eagle It seems like the doctors just shrug off FND because they don’t understand it. It’s why I said in my video it’s like living in a strange world where no one has understanding, it can be difficult to get a diagnosis as I said it mimics other conditions. Did they suspect something else before you got the diagnosis? They suspected MS with me at first
@@EthersCubing
No, they haven't had a previous diagnosis
Hi, I’m currently in hospital, been here a month learning to walk and talk again. It changes frequently .I find that I’m getting new symptoms as others calm down.I suddenly am triggered with large involuntary movements when I am near the lights here in any hospital room. Also the hydra pool reflections. It’s not great as you go backwards in something and the drs start shaming you .
Bless you, are you making steady progress with learning to walk and talk again? I hope it’s going well for you.
@@EthersCubing I’m still in hospital , nowhere near ready to go home they have said . I am string though, fighting to get back to where I was , or at least home.
I have been suffering with FND since September of 2018... I was unable to work for approximately 10 months but recovered and managed to get my mobility back. Just in the recent couple of weeks I've relapsed and having horrible symptoms. I occasionally get paralysis and gait problems which require me to use a walker. Curious if you are working or on disability? Amazing cube skills btw!
I’m not currently working, I have been out of work for about a year and a half now😟. I am going to try and return to work soon, of course I have to check with my neurologist and my psychiatrist first, but I would like to go back to work, the question is whether I am well enough or not. I hope my video has helped you, do check out the support group if you haven’t already, it’s a great group, very supportive.