A very informative video. But there's a significant problem with FND that is ignored in this video. The video acknowledges that approximately 37 percent of FND cases can be caused by an injury. Yet, since FND is listed in the DSM 5, various clinicians and others automatically list FND as a Pysychological condition. As a result those patients are denied the proper "Physical" treatments that they need in order to recover. How many FND sufferers are out there that could have recovered correctly had their condition not been listed as a Psychological condition?
@G Ramirez Great reply, however based on experience this doesn't quite cut it. Since being diagnosed with FND I've been routinely denied the treatments that I need, because too many clinicians have jumped onto the Psychological bandwagon. I experienced a physical back injury, which many have indicated that I need various "physical" therapies. In fact when I was going through "physical" therapies there was measurable documented progress, but it was taking a long time and treatments were often cut off and/or denied all together. Once the diagnosis of FND came along, I could not get any kind of physical therapies at all. Everything shifted to putting me through rounds of psychotherapy which did absolutely nothing. People should view this exellent case study: ua-cam.com/video/ocPAx8QZ2Wo/v-deo.html The mother of this teenager describes the physical therapies that her daughter was going through to recover and there was no evidence what so ever of a psychological trigger of her FND symptoms and because of the physical therapies, her daughter was progressing. If this teenager had clinicians jump on to the psychological bandwagon, she would not have gotten the propper treatments and progressed. I will use the analogy of a broken leg. The fracture needs possible surgery, a cast, followed by possible Physiotherapy. If the patient went and saw a clinician who jumped onto the psychological bandwagon because the person was having a bad day just prior to their injury, the person might be required to go for some counseling in stead of getting the fracture treated. Yes this sounds rediculous, but like I've said, I and many others have been pushed down the Psychological path of treatments, all because FND is listed in the DSM 5 as a Mental Health condition. What clearly needs to happen is that FND needs to be further defined by the type. 1) Where sympoms were caused by Psychological Triggers. 2) Where symptoms were caused by Physical Triggers. 3) Where symptoms were caused by Chemical Triggers like medications. Once that becomes a reality, then patients (depending on their particular triggers) will finally get the proper teatments that they need and deserve.
@G Ramirez Hello, I really appreciate your reply. However, how on earth can my above reply "clearly demonstrates why you are not getting better"? I've had various clinicians who actually focused on the Mechanism of Injury and prescribed the various "physicial" treatments that were actually working. Then there were those clinicians who jumped on the Psychological bandwagon who indicated everything was in my head. Diagnositic tests eventually proved that it wasn't in my head and that I had no control over the symptoms when they flared up. Yet even with the results of those tests, the clinicians resorted back to recommending Psychotherapy. This is the reason why the diagnosis of Conversion Disorder was eventually done away with. Conversion Disorder went on the assumption that a person was experiencing psychological stressors that were being "Converted" into the physical symptoms that they were experiencing. Also many clinicians used to use Conversion Disorder as a diagnosis of last resort. In fact with FND, psychological stressors were removed as a pre-requisite for diagnosis. My heart goes out to those who live with FND. Primarily because many of those people have clinicians who are still stuck in the mind set of Conversion Disorder. As long as that mind set remains, many people who are experiencing symptoms due to a Physical or a Chemical trigger, will likely never recover.
WOW i've was told yesterday that I have FND. I have problems with my balance, pain, swallowing speech and movement. I was asked if I had had experienced anything in my life, such as someone dying, being attacked or a major life changing event and I said NO. However it's now 24 hours since I was ask this and it has suddenly come back to me that when I had an operation the anaesthetic went wrong! when I was injected I felt like I was being burnt alive! For years I have had flash back, had times when I couldn't stop thinking about it and the overall experince distoryed me inside. My doctors and NHS have ALL ignored me when i tried to explain what happened. So maybe this is the cause of my FND either way FND is a nightmare.
Laughing at hospital stays and doctors working to diagnose. My neurologist refused to help me. My local ER called me a.drug addict and told me to never come back. My GP is afraid of it and my psych team refused to learn about it. I'm having to find more doctors and just hope I find one who actually gives a rip.
Same here. It is terrible. I have been diagnosed too. They have no idea how scary and depelitating this disease is. And there are far more serious symptoms than this. Like feeling like electric shocks, problems swallowing. Chest and muscle tightening feeling like the heart. I pray 🙏 one day they could just give us a day and ask us or observe us. I will pray 🙏 for you. Stay strong 💪 WARRIOR
My first time at er for paralysis and was hinted that I could be faking it. If you are newly diagnosed, I was told to read or watch videos within the last 2 years. FND definition has changed a lot since video came out
My daughter was recently diagnoses with FND. I wish I would have found this video sooner as it has been a world of help to me. I have shared it with some family members and asked them to watch it as well. I feel much better about her diagnosis and how we can handle it now that I have seen this. THANK YOU!
Great harm is done by patients with ME/CFS when wrongly diagnosed as FND. When the chronic, multisystem, autoimmune disorder, ME/CFS, is misdiagnosed as being a psychiatric complaint, patients are offered CBT, which is irrelevant to a non-psychiatric illness, and GET, Graded Exercise Therapy, which in many cases pushes a mildly or moderately ill patient into permanent and complete incapacity and intractable pain. The Institute of Medicine (Now the Academy of Medicine) commissioned a report on ME/CFS which was published in February, 2015. The core finding of this Commission was that this is a non-psychogenic multisystem very disabling disease. It’s defining aspect is that exertion, of any type, physical, cognitive or emotional, ‘may adversely affect many organ systems’. Most usually precipitated by an apparently mild virus, from which the patient does not recover, the most appropriate first response to this symptom pattern is to advise an extended period of complete rest, thus conserving the patient’s energy for the use of the immune system. Before this illness was taken over by psychiatry, a significant proportion of patients recovered completely, or virtually completely. The current treatments have resulted in a situation in which almost no one recovers, and the illness has come to be regarded as one of almost inevitable consistent deterioration. Typically ME/CFS patients are high-functioning, conscientious individuals, very often in physically demanding professions: athletes, dancers, marathonners, back=packers, or manual workers, or nurses, carers for disabled or elderly family members, mothers of young children. If you have been diagnosed with FND, but know that your illness followed a viral illness, in the context of a generally happy and successful life, and you know that you are not suffering from anxiety or depression (except because your illness has completely disrupted your life), you do not have FND. You need to conserve exertion, and avoid any suggestion that you should ‘push through’. If your medical advisors tell you otherwise, their advice, however well-meant, is a danger to you. Find out about ME/CFS and make your decisions accordingly.
Thank you Nancy Blake and its not just ME/CFS. I was given a diagnosis of FND and subsequently refused anymore specialist referrals until I became very ill. It turned out to be non Hodgkins Lymphoma but because FND apparently has a thousand symptoms, I fit that criteria. I have had a real job to get this FND diagnosis removed from my medical records. The reason the experts tell us this diagnosis is rarely wrong is because they won't/can't/don't want to remove the diagnosis if something more ominous is found to be the cause. Neurologists need to look beyond the end of their noses before diagnosing this 'end of the road diagnosis'. Quite often I'm sure these patients are just being seen in the wrong department.
In the future they will find that it's a mix of inflammation, hormones, nerve damage, cortisol levels, Arcadian rithem, toxicity levels, neurotransmitters, vitamin and mineral deficient and brain damage because of stress mental emotional physical stress are always physical anyway the deeper you go. You are born with the brain and nerves you get. Then let's see how far can you go whit that. A society where there is altruism non toxins non los there will be non of these symptoms. I lost everything many times in my life. Now I lost everything again, said this guy by himself at a pc. This time my body wouldn't wanted to go out of fight or flight fucking cortisol overload. Now I'm just trying to stay alive day by day. Find your inner strength soon in life be happy with a stone soon in life. Make friends and stick with them. Find a mate have a healthy life if possible make a baby and then your are done. I didn't make it. Lost my whole world around me and now in side myself. In a nutshell be at the top of your functioning and live each day as if you live one day. Wim Hoff Technic, Yoga, same diet every day, routine, find a sport and hobby and be a master not a person who knows a bit about everything, fasting and meditation, stay away of city's if possible. A brain is like a world. If it's organized it's nice and pleasant if there is to much chaos there will be pain and disorder.
*electricity and telecommunications have been catastrophic on the natural environment (earth, solar system) and human beings, and all life. don't let brain science (BS) mislead you in any way. we live in a gravely unnatural world.*
I was misdiagnosed with this last year. What I have is EDS & was told I have this when I also have illnesses that explain my symptoms better. Why was I given an incorrect diagnosis when you say part of the diagnostic criteria is not having illnesses or medical explanations can could match it?
@MrsXx I'm going to be sueing my Neuro for misdiagnosing me with FND about a year ago. If you haven't already, I suggest looking into "Medical Malpractice" and checking out your medical records would be a good idea. That's how I found out and not only about this misdiagnosis, but the Neuro had been writing misinformation and a lot of what was in my record was either false, misunderstood, or straight up wrong. The Neuro quoted me for things I never said, and when I read over my records, it was like I was reading them about someone else. Absolutely ridiculous. (Here's an example; the records stated that I "left high school to do independent studies and practice welding classes; has black outs almost daily, strong family connection to Bipolar Disorder"- NONE of that it correct nor did I ever say any of that. And no one in my family, immediate or extended, has bipolar disorder. I never stated that I black out "almost daily" or at all.) I tried to talk to the Dr., give them the benefit of the doubt that maybe things were severely misunderstood, but that's not been the case. So. Sue 'em it is! 🙃 I hope they aren't doing this to other patients, but from forums and group discussions I've read, that seems to not be the case. I am sorry you had to deal with the misdiagnosis, and sorry to myself. I hope it all goes well for you. Best of luck!
If the amygdala has more physical connections to the SMA then that is a physical abnormality and so this should be considered a neurological condition with a clear pathology - so certainly a medical issue.
Make videos on patient got cured from functional neurological disorder ,we dont want your grades studies etc etc ,make inspiring videos patient got cured.
@@projectsmultimedia6302 I’m so glad to see this comment. I’ve become sensitive due to a smart meter being put on my home and I’m struggling so much on how to live again
Our brains software is screwed basically. We can't map it. It's the pathways. No diagnostic equipment can map them. Stress affects all illnesses. I get so fed up with the psychological stuff.
*that's a good sign, to be fed up with the religion of psychiatry and its primary belief system, mental illness. they worship it, be careful. or, do what god said: run for your life.*
I would like to put forth a concise culmination of what I've heard here, what I've read online, and what I've experienced as a person who has FND. FND is a common neurologic disorder that affects communication within the brain. It ranges in severity. Symptoms are triggered by overstimulation of the nervous system. The average person affected by FND experiences minimal symptoms. Some individuals may present with a hypersensitivity to stimulation and will experience severe symptoms. Psychological and physical stress or injury can exacerbate symptoms due to the stress they put on the nervous system. Although there is no cure for FND, therapy and changes in lifestyle can provide remission for these symptoms. Individuals who present with profound or long lasting symptoms are currently the only ones given an FND diagnosis. These individuals typically have a history of PTSD or chronic illness. While treatment can provided remission FND is a lifetime diagnosis. *FND it's not currently recognized as a neurologic disorder the same way that schizophrenia is not recognized as a neurologic disorder despite schizophrenia being an illness you are born with and made worse by psychologic stressors that the brain cannot compensate for due to a lack of neuroreceptors between the two hemispheres of the brain.
I was diagnosed by U of M last month. I'm not truely happy with FND. I have no current up to date testing. I have physical exams , old EGG in office , a old highschool three day EEG test . No MRI or anything like it done. I was told axiety possibly. ...but all the therapist i see say I'm too strong and happy and confident and don't show a axiety disorder to them. I don't know why I'm not satisfied... I'm talking about a large amount of symtoms ...and a high job lost .... No one is helping me keep a job due to liability of the companies I work for. I'm so tired of this.
Drs today sadly dont care If you dont have a hammer or nail in your head at the time if tge visit it anxiety or something stupid. I got two spots in my head and they tell me the same thing its PTSD or anxiety. I'm like what ! I'm happy an show no worries or depression.. junk bullshit drs now .
FND is a disorder that is diagnosed through exclusion meaning a neurologist needs to exclude every other possible cause. They can only do this by running all available diagnostics. If they all come back clean then FND can be diagnosed. Unless you've done an EEG, EMNG, Evoked Potentials, and MRI, they cannot diagnose you with FND because you may have an underlying pathology present in one of these tests that could account for the simptoms.
Curious if you are still dealing with these symptoms 5 yrs later. I am with the same hospital system and therapy has given me some management tools not remission.
I was diagnosed with pnes in 2018. Today in 2022 I’m starting to see a OT for FND. It’s a super hard situation and it takes a lot of self patience and can be exhausting.
When does Western Medicine finally team up with Traditional Chinese Medicine?? Acupuncture, herbs, tui na, qi gong and tai chi are the right approach when ones energy system is disrupted. It has to do with the meridian system. Been there, done it.
Thank you so so much for posting this. I have only recently been diagnosed and have been ignoring it but decided to look today and this has helped alot! Thank you so much
😮 so informative. Thank you so much for sharing. I only wish All Drs understood or had some understanding about Fnd . Im especially interested in the fact that this condition is totally treatable.
I have fnd i am in so much chronic pain, every day in my toes, feet, hands and fingers and now beginning to climb up my legs and past my knees. It starts off with a knot type feeling usually in my calf or nerve twitches in my toes. The pain is so servere that it sends a deep dull pain in my forehead. I was so fit and healthy and only four years ago. Now I am wheelchair bound and fully dependent on others. It is soul destroying. I just wondered if the twisting of the tendons and muscles may leave permanent damage? because it always locks my limbs at the time of pain and I have also felt numbness down one side or both sides when in pain. My GP has prescribed me Oramorph even that at times does not work. If anyone has similar symptoms I would love to hear from you please. Or A Neurologist please who does not mind sparing their time. Thank you in advance.
I think mine are the same triggers. But I'm pretty new to all of this. Just living with this for 4 months now. Also my stress trigger seems to be delayed. I get symptoms 1 or 2 days after stress. But if I move/do to much like walking or sometimes even washing my hair my legs or arms are getting heavy fast and It can be painfull
According to the National Organization for Rare Diseases (NORD), FND can be both psychological or physiological. I had FND symptoms from an adverse reaction to medication. My symptoms cleared when the dose was significantly reduced. I DNA test showed that it was caused by the way I metabolize certain medications.
What medication are you referring to? I experienced my symptoms the instant I received an infusion from an anti Tumor Necrosis Factor drug (TNF) known as Remicade, and Enbrel. Good luck to you.
What DNA tests did you take for this? Benzodiazepines gave me horrific sensory processing disorder and FND symptoms but my providers have been too stubborn to consider this.
@@okzoomer5728 I think I may have had sensory processing disorder as well. Lots of sensory overstimulation. I got the DNA test from my doctor. The company was ESA Labs.
I have been diagnosed this week and have a history of hydrocephalus and spinal DAV What I am worried about now is, how do I know when not to go to the doctor and when to? I now feel like I will be crying wolf or have been so am embarrassed to ask for future help for pain and other symptoms. The diagnosis feels like I am a hypochondriac. I feel confused and upset and like a fool
*you are confused. you aren't a fool.* *i'm disturbed that nobody has responded to you. man, it IRKS me so badly!* *you aren't crying wolf. you care about yourself and have good priorities. 1) you want to understand what you experience, and why 2) you want proper care in a timely fashion 3) you want to be clear and have clear direction and you seem to lack it 4) you don't want to be unnecessarily burdensome with someone else's time and attention* *you are well within reason to feel the way you do. what you need is more information to better understand your condition and symptoms. some of that you will need help with and some of it you can do on your own (for example, keeping a symptom journal and learning about each symptom).* *you deserve proper attention, due consideration, accurate diagnosis, to feel secure in all aspects of your health care needs, to feel safe and respected. don't let anyone undermine this, including yourself.*
Hello, guys! One of my closest friends was recently diagnosed with FND. Half of his body is paralyzed, he's receiving treatment and has made some progress since then, so I'm not too worried about him. But the interesting thing about his case is that he had several dreams prior to the onset of his symptoms in which half of his body was a statue. Has anyone here ever gone through a similar experience?
Sorry, couldn't watch more than 10 mins of this. Diagnostic criteria here in the UK seems to be a clear scan. BP drops, hypothermia, changes in reflex from normal to hyper and abnormalities on EEG get ignored in favour of this 'easy' diagnosis. Patients are subsequently treated with contempt if they dare to seek medical help for further disabling symptoms so they give up bothering. Saves the NHS a tonne of time and money.
Absolutely agree with this. I had very specific symptoms that could of been something other than neurological but I was only ever seen in the neurology department. After my diagnosis of FND I got sicker but I was turned away from my doctors with antidepressants and no more referrals. It was only when a very physical symptom arose that I got sent to a haematologist who diagnosed me with Non Hodgkins Lymphoma. Every one of my symptoms was that of NHL but neurologists didn't recognise that. I'd told those neurologists I thought I was dying and they reassured me I wasn't... the truth is, I was.
I'm absolutely fuming after last GP practically gaslighted my pysical symptoms in order to group them all psychosomatic even though they found a Chiari Malformation type 1 and I already was diagnosed with fibromyalgia. The neurologist said I couldn't be treated medically. Yet FND can be treated. I have had trauma to both the spine and skull. It's a dangerous game they play because for years I was told I was depressed. I've never been depressed in all my life even with constant pain and the rest. It's a cop out
I agree to a certain extent with these replies. GP's do not have a clue. But I was seen by a pioneering consultant, Professor Mark Edwards in the UK who helped me a lot. He and another Consultant in Edinburgh developed a website back in 2008 or around that time called www.neurosymptoms.org. Check it out. But yes GPs and the majority of medical professionals in the NHS and private are ignorant of this. I have had FND since 2008 and their inability to see it as a genuine physical medical disorder even with a diagnosis from a consultant is astounding. They ignore you. But then doesn't the majority of medical professionals when they can't work out what is wrong with you. It is as though it is an affront to them.
@ciaran perry a medical system that does not parley or is too egotisticaly deficient in its knowledge of brain And spine dynamics x is deficient in its understanding of the depth and significance of life itself ,stay true to you.
@ciaran perry train your brain and body gently and in unison. The fuckry of the National death system is a blessing in disguise. Trust your body. Don't resist.
I believe my friend has this. It's been going on for years. Strokes that aren't real, seizures also no organic cause, Parkinson's like disorder, and now she's claiming back pain and inability to walk. She's scheduled for a cervical laminectomy with fusion very soon. I'm so worried they're making a mistake. She's on a heavy load of pain pills. I think her problems are being totally mishandled. I'm concerned. They also dr and hospital hop. Her last "stroke" she was told it was anxiety. Of course, they found a new hospital and doctor. Her husband isn't helping the situation. He's part of the problem
British input, mentioned dystonia or tardive dystonia so why does fnd hope who has Dr Mark Philips and dr Jon stone set up in London helping all other movement people are. Yet Dr Mark Philips doesn’t think tardive dystonia etc be not allowed to be part of the studies. We have more movements than Parkinson sufferers dystonia sufferers etc so why oh why are tardive sufferers .my medical papers states conversion disorder which is then also my last neurologist states function disorder. Is that not enough to qualify for world fnd? We have NOT HAVE GOT A SPECIALIST IN THIS Country. Tardive sufferers are yet again ignored. Causing pain suffering anger frustration etc.
Why these so-called medical academics of today all believe that standing in the corner of a room and nervously reading out the content of 150 Power Point slides is the only way to provide useful information to an audience?
My husband has something that we haven't been able to figure out. It happens mostly when he's asleep or exhausted. Moments later he wont be able to move. He can faintly speak out to me saying "help!". His body is paralyzed and I have to physically get on top of him and grab behold his neck in order to pull him up and he regains movements. He'll be extremely tired afterwards or have migraines. It can happen back to back and we are clueless on what kind help he may need. They are seizure-like but not seizures. It has to be surgical.
March 2013 I was told I was number 20 with complex FND. I had everything from functional paralysis to non-epileptic seisure. I was diagnosed after multiple tests and investigations as I was healthy but my nerves decided to act differently. My recovery was 13 months of rehab learning to function again from walking, eating and talking. I have learnt over time to identify my triggers.
@@lorensworld7524 best of my wishes to you and your daughter. My daughter was 15 when diagnosed. It is still a huge battle every day. Cognitive therapy did help for a bit ( what little we were able to afford of the therapy anyway ) but new symptoms keep popping up.
Loren's World I was recently diagnosed with FND - am almost 50 now, but symptoms of not being able to button a shirt or pour juice when I was 13 and such started over 35 years ago and I started "needing" a cane at 25, forearm crutches by 30 and now a wheelchair due to balance problems. I am just now going to start seeing a psychologist & hope it's not too late. I have both epileptic and non-epileptic seizures, myoclonus & tremors. Very hard to wrap my head around the FND when even Mayo Clinic had other diagnoses. I just did a video EEG study & was bummed out that I had both kinds of seizures so I can't go off my meds. Anyway so happy your daughter was diagnosed early so she has a good chance at recovery. I wish her well. Original reason for responding was just to say my seizures are also caused by noise- especially with too many conversations going on at once or with commotion in general. Luckily I know this is the trigger for some of these so if I can escape the situation I don't have a severe seizure. Best wishes to all involved in such a frustrating diagnosis for all involved!
if all this was true every er doctor and nurse would be dealing with this from the trauma of seeing all the trauma they have seen funny thing to me is when they don’t know you get thrown in this category i have been many times went to mayo clinic and had myasthenia gravis and dystonia
I had the opposite problem. I was having like 3or 4 kinds of seizures and because my EEG comes back normal between those events they more or less just kinda acted like I ws just really anxious. I had t had al tonic clonic seizures since the age of 4 but for some unknown reason, I was conversing with a friend and stiffened, went down and was quite confused when I woke up. For so reason. They had their mind made up before dong any sorta tests from the notes on The paper I left the ER with. When en route to the ER, I was I a very odd state, EVERYTHING startled me. It was weird. Lol they kinda retracted the PNES thing when I went into one trying to get in my friends car. Since then, I have learned to recognize when a tx seizure is coming and usually lay down in the floor and just knowing and knowing I’ll be ok keep me from such extreme reactions. There other types were much less scary but wow. I’m just glad my neurologist was willing to figure out what the issue was. It was very distressing g knowing something was very wrong but not being heard.
My Gait and tremors (besides my familial Essential Tremors) have lessened since I was diagnosed 3 months ago - instead of what we thought was Parkinson's. I really want to know How I could be getting better with just being diagnosed? I'm so so very happy, I am but I Know it can't be just being told, which would prove to some that I was "making up" my symptoms before!! Can anyone here relate?
My sister had this and sadly died last year. Intense pain and weakness. Now her daughter has been diagnosed after being rushed to hospital with stroke symptoms and intense body jerks. So possible hereditary.
I think i have found the answer to my problem, this is a daily occurrence sometimes multiple, breathing shallow, vison, ataxia, . i was in a severe car accident in which i stumbled around concious for 2 minutes to black out from blood loss. This at age 15. Through life lots of stress and physical trauma, Initially true epilepsy , but evolved to a state of dysfunction on daily basis. Chronic Pain. Severe meningococal infection from ears and or tick bites.
*it really bothers me when someone makes a substantial comment like yours but nobody replies. it bothers me a LOT. it's a demonstration of extreme disconnect between humans. you aren't just words on a screen. you're a live person and you should be acknowledged.* *i suffer a lot of various conditions from various causes and i learned a long time ago that much i would have to learn to manage and cope with on my own. it's a perpetual silent grief to live incapacitated, damaged, disabled, symptomatic but that's life and it has to be accepted.* *i hope you'll take excellent care of yourself.*
Can't believe it's taken this many years for me to find this video. Genuinely feeling hopeful. Also noting that the social isolation and loss of work caused by FND has been a real setback, and just grieving that.
I've been in and out of Hospitals with various 'disorders' my whole life. This FND started after I'd been put in an induced Coma for 7 weeks. I fought hard to get out of the wheelchair they'd left me in, by using Physiotherapy. Now, 8 years later, with this excruciating 'FND' getting worse by the day, I fear that I'll be back in a wheelchair due to medical neglect. Cannot get any help.
I had to turn off after 13 mins because I was totally distracted by all the ERRMMS!. If you are going to speak publicly on such a serious subject you need to really work on your presentation. The constant pauses and erms do not inspire those listening with any confidence in what is being said.
I finally had Brain Scans and Nerve Conductor Tests (painful) that prove it is not all in my head but no-one seems to be able to fully understand these test results. Further tests needed have not been done and the Doctors still refuse to give me any actual help at all. yeah, Cmon.
You both Present so well together!! Thank you both for teaching us and esp our Drs about what we've been hit with so hard and given no answers, only judgements.
If you have this disorder, if you’re looking to pull the root cause vs. treating symptoms with drugs, start being an investigator of everything that goes into your body. The nutrition facts on the labels of foods, why would you not investigate the bean and seed oils, sugars, and complex carbohydrates
It took mine 20 pluus years and 8 non necessary eye opporations over 2 decades. Even though im fully aware now through educacating myself znd huge open mind ...through ther my symptoms have got worse ...im now latterly fighting two fights o never chos ..ii know fnd is converted internal trauma i feel so sorry for the medical community trynw deliv3r that news
A very informative video. But there's a significant problem with FND that is ignored in this video. The video acknowledges that approximately 37 percent of FND cases can be caused by an injury. Yet, since FND is listed in the DSM 5, various clinicians and others automatically list FND as a Pysychological condition. As a result those patients are denied the proper "Physical" treatments that they need in order to recover. How many FND sufferers are out there that could have recovered correctly had their condition not been listed as a Psychological condition?
@G Ramirez Great reply, however based on experience this doesn't quite cut it. Since being diagnosed with FND I've been routinely denied the treatments that I need, because too many clinicians have jumped onto the Psychological bandwagon.
I experienced a physical back injury, which many have indicated that I need various "physical" therapies. In fact when I was going through "physical" therapies there was measurable documented progress, but it was taking a long time and treatments were often cut off and/or denied all together.
Once the diagnosis of FND came along, I could not get any kind of physical therapies at all. Everything shifted to putting me through rounds of psychotherapy which did absolutely nothing.
People should view this exellent case study:
ua-cam.com/video/ocPAx8QZ2Wo/v-deo.html
The mother of this teenager describes the physical therapies that her daughter was going through to recover and there was no evidence what so ever of a psychological trigger of her FND symptoms and because of the physical therapies, her daughter was progressing. If this teenager had clinicians jump on to the psychological bandwagon, she would not have gotten the propper treatments and progressed.
I will use the analogy of a broken leg. The fracture needs possible surgery, a cast, followed by possible Physiotherapy. If the patient went and saw a clinician who jumped onto the psychological bandwagon because the person was having a bad day just prior to their injury, the person might be required to go for some counseling in stead of getting the fracture treated. Yes this sounds rediculous, but like I've said, I and many others have been pushed down the Psychological path of treatments, all because FND is listed in the DSM 5 as a Mental Health condition.
What clearly needs to happen is that FND needs to be further defined by the type. 1) Where sympoms were caused by Psychological Triggers. 2) Where symptoms were caused by Physical Triggers. 3) Where symptoms were caused by Chemical Triggers like medications. Once that becomes a reality, then patients (depending on their particular triggers) will finally get the proper teatments that they need and deserve.
@G Ramirez Hello, I really appreciate your reply. However, how on earth can my above reply "clearly demonstrates why you are not getting better"?
I've had various clinicians who actually focused on the Mechanism of Injury and prescribed the various "physicial" treatments that were actually working. Then there were those clinicians who jumped on the Psychological bandwagon who indicated everything was in my head.
Diagnositic tests eventually proved that it wasn't in my head and that I had no control over the symptoms when they flared up. Yet even with the results of those tests, the clinicians resorted back to recommending Psychotherapy.
This is the reason why the diagnosis of Conversion Disorder was eventually done away with. Conversion Disorder went on the assumption that a person was experiencing psychological stressors that were being "Converted" into the physical symptoms that they were experiencing. Also many clinicians used to use Conversion Disorder as a diagnosis of last resort.
In fact with FND, psychological stressors were removed as a pre-requisite for diagnosis.
My heart goes out to those who live with FND. Primarily because many of those people have clinicians who are still stuck in the mind set of Conversion Disorder. As long as that mind set remains, many people who are experiencing symptoms due to a Physical or a Chemical trigger, will likely never recover.
Well it’s not like medical issues cannot cause psychological issues.
It is a psychological issue bro I got it from drugs
@@wavxy7454 what medications were you taking? I got mine from medications
This is great, but I never hear about treatment for people who are symptomatic 24/7 rather than episodic.
WOW i've was told yesterday that I have FND. I have problems with my balance, pain, swallowing speech and movement. I was asked if I had had experienced anything in my life, such as someone dying, being attacked or a major life changing event and I said NO. However it's now 24 hours since I was ask this and it has suddenly come back to me that when I had an operation the anaesthetic went wrong! when I was injected I felt like I was being burnt alive! For years I have had flash back, had times when I couldn't stop thinking about it and the overall experince distoryed me inside. My doctors and NHS have ALL ignored me when i tried to explain what happened. So maybe this is the cause of my FND either way FND is a nightmare.
Laughing at hospital stays and doctors working to diagnose. My neurologist refused to help me. My local ER called me a.drug addict and told me to never come back. My GP is afraid of it and my psych team refused to learn about it. I'm having to find more doctors and just hope I find one who actually gives a rip.
Seriously scary that all our stories sound the same.
I was also treated as an addict...and pretty much everything you said.
This ☝
Where are these hospitals that admit you in order to work with doctors keen to diagnose a patient? 🤣 In Wonderland.
Same here. It is terrible. I have been diagnosed too. They have no idea how scary and depelitating this disease is. And there are far more serious symptoms than this. Like feeling like electric shocks, problems swallowing. Chest and muscle tightening feeling like the heart. I pray 🙏 one day they could just give us a day and ask us or observe us. I will pray 🙏 for you. Stay strong 💪 WARRIOR
My first time at er for paralysis and was hinted that I could be faking it. If you are newly diagnosed, I was told to read or watch videos within the last 2 years. FND definition has changed a lot since video came out
My daughter was recently diagnoses with FND. I wish I would have found this video sooner as it has been a world of help to me. I have shared it with some family members and asked them to watch it as well. I feel much better about her diagnosis and how we can handle it now that I have seen this. THANK YOU!
I have never felt more empowered to fight against this Diagnosis as any sort of valid explanation for what I am going through.
Agreed. Such a lot of stuttering nonsense here.
Great harm is done by patients with ME/CFS when wrongly diagnosed as FND. When the chronic, multisystem, autoimmune disorder, ME/CFS, is misdiagnosed as being a psychiatric complaint, patients are offered CBT, which is irrelevant to a non-psychiatric illness, and GET, Graded Exercise Therapy, which in many cases pushes a mildly or moderately ill patient into permanent and complete incapacity and intractable pain. The Institute of Medicine (Now the Academy of Medicine) commissioned a report on ME/CFS which was published in February, 2015. The core finding of this Commission was that this is a non-psychogenic multisystem very disabling disease. It’s defining aspect is that exertion, of any type, physical, cognitive or emotional, ‘may adversely affect many organ systems’. Most usually precipitated by an apparently mild virus, from which the patient does not recover, the most appropriate first response to this symptom pattern is to advise an extended period of complete rest, thus conserving the patient’s energy for the use of the immune system. Before this illness was taken over by psychiatry, a significant proportion of patients recovered completely, or virtually completely. The current treatments have resulted in a situation in which almost no one recovers, and the illness has come to be regarded as one of almost inevitable consistent deterioration.
Typically ME/CFS patients are high-functioning, conscientious individuals, very often in physically demanding professions: athletes, dancers, marathonners, back=packers, or manual workers, or nurses, carers for disabled or elderly family members, mothers of young children.
If you have been diagnosed with FND, but know that your illness followed a viral illness, in the context of a generally happy and successful life, and you know that you are not suffering from anxiety or depression (except because your illness has completely disrupted your life), you do not have FND. You need to conserve exertion, and avoid any suggestion that you should ‘push through’. If your medical advisors tell you otherwise, their advice, however well-meant, is a danger to you. Find out about ME/CFS and make your decisions accordingly.
I was told I have Functional tremor - Is that the same as FND?
Thank you Nancy Blake and its not just ME/CFS. I was given a diagnosis of FND and subsequently refused anymore specialist referrals until I became very ill. It turned out to be non Hodgkins Lymphoma but because FND apparently has a thousand symptoms, I fit that criteria.
I have had a real job to get this FND diagnosis removed from my medical records. The reason the experts tell us this diagnosis is rarely wrong is because they won't/can't/don't want to remove the diagnosis if something more ominous is found to be the cause.
Neurologists need to look beyond the end of their noses before diagnosing this 'end of the road diagnosis'. Quite often I'm sure these patients are just being seen in the wrong department.
Thank you!!!
100percent agree.
So-called, "specialists," live in their own little bubble of speciality and usually fail to consider alternative or other causes.
@@CommonSenserules1981me as well, it's called Functional Movement Disorder FMD, I think she said it's under the umbrella term of FND
In the future they will find that it's a mix of inflammation, hormones, nerve damage, cortisol levels, Arcadian rithem, toxicity levels, neurotransmitters, vitamin and mineral deficient and brain damage because of stress mental emotional physical stress are always physical anyway the deeper you go. You are born with the brain and nerves you get. Then let's see how far can you go whit that. A society where there is altruism non toxins non los there will be non of these symptoms. I lost everything many times in my life. Now I lost everything again, said this guy by himself at a pc. This time my body wouldn't wanted to go out of fight or flight fucking cortisol overload. Now I'm just trying to stay alive day by day. Find your inner strength soon in life be happy with a stone soon in life. Make friends and stick with them. Find a mate have a healthy life if possible make a baby and then your are done. I didn't make it. Lost my whole world around me and now in side myself. In a nutshell be at the top of your functioning and live each day as if you live one day. Wim Hoff Technic, Yoga, same diet every day, routine, find a sport and hobby and be a master not a person who knows a bit about everything, fasting and meditation, stay away of city's if possible. A brain is like a world. If it's organized it's nice and pleasant if there is to much chaos there will be pain and disorder.
psychological issues are a problem in your brain; and guess where your brain sits! yes, in your body!
*electricity and telecommunications have been catastrophic on the natural environment (earth, solar system) and human beings, and all life. don't let brain science (BS) mislead you in any way. we live in a gravely unnatural world.*
I was misdiagnosed with this last year. What I have is EDS & was told I have this when I also have illnesses that explain my symptoms better. Why was I given an incorrect diagnosis when you say part of the diagnostic criteria is not having illnesses or medical explanations can could match it?
The fault doesn't lie in the disorder's description, but in your doctor's judgement.
@@AnnaVannieuwenhuyse I would love to sue that Neurologist then lol
@MrsXx I'm going to be sueing my Neuro for misdiagnosing me with FND about a year ago. If you haven't already, I suggest looking into "Medical Malpractice" and checking out your medical records would be a good idea. That's how I found out and not only about this misdiagnosis, but the Neuro had been writing misinformation and a lot of what was in my record was either false, misunderstood, or straight up wrong. The Neuro quoted me for things I never said, and when I read over my records, it was like I was reading them about someone else. Absolutely ridiculous. (Here's an example; the records stated that I "left high school to do independent studies and practice welding classes; has black outs almost daily, strong family connection to Bipolar Disorder"- NONE of that it correct nor did I ever say any of that. And no one in my family, immediate or extended, has bipolar disorder. I never stated that I black out "almost daily" or at all.) I tried to talk to the Dr., give them the benefit of the doubt that maybe things were severely misunderstood, but that's not been the case. So. Sue 'em it is! 🙃 I hope they aren't doing this to other patients, but from forums and group discussions I've read, that seems to not be the case. I am sorry you had to deal with the misdiagnosis, and sorry to myself. I hope it all goes well for you. Best of luck!
If the amygdala has more physical connections to the SMA then that is a physical abnormality and so this should be considered a neurological condition with a clear pathology - so certainly a medical issue.
I have a Chiari malformation and wonder if it is a cause.
Mvhhgh h h hh h h hhhhhhhhhhhhh
The dangers of not re-reading...Great harm is done TO patients with ME/CFS ......!
Make videos on patient got cured from functional neurological disorder ,we dont want your grades studies etc etc ,make inspiring videos patient got cured.
I was diagnosed 4 years ago from the University of Utah. I still experience seizures, stuttering, and tremors caused by stress
Maybe is not stress check if you are now hypersensitive to electromagnetic fields
@@projectsmultimedia6302 I’m so glad to see this comment. I’ve become sensitive due to a smart meter being put on my home and I’m struggling so much on how to live again
Our brains software is screwed basically. We can't map it. It's the pathways. No diagnostic equipment can map them. Stress affects all illnesses. I get so fed up with the psychological stuff.
Psychological illnesses are not an easy stuff and it is normal to get fed up with !
Me too.
Yeah same.
*that's a good sign, to be fed up with the religion of psychiatry and its primary belief system, mental illness. they worship it, be careful. or, do what god said: run for your life.*
I would like to put forth a concise culmination of what I've heard here, what I've read online, and what I've experienced as a person who has FND.
FND is a common neurologic disorder that affects communication within the brain. It ranges in severity. Symptoms are triggered by overstimulation of the nervous system. The average person affected by FND experiences minimal symptoms. Some individuals may present with a hypersensitivity to stimulation and will experience severe symptoms. Psychological and physical stress or injury can exacerbate symptoms due to the stress they put on the nervous system. Although there is no cure for FND, therapy and changes in lifestyle can provide remission for these symptoms. Individuals who present with profound or long lasting symptoms are currently the only ones given an FND diagnosis. These individuals typically have a history of PTSD or chronic illness. While treatment can provided remission FND is a lifetime diagnosis.
*FND it's not currently recognized as a neurologic disorder the same way that schizophrenia is not recognized as a neurologic disorder despite schizophrenia being an illness you are born with and made worse by psychologic stressors that the brain cannot compensate for due to a lack of neuroreceptors between the two hemispheres of the brain.
Thank you so much for your summary! Very helpful.
I was diagnosed by U of M last month. I'm not truely happy with FND. I have no current up to date testing. I have physical exams , old EGG in office , a old highschool three day EEG test . No MRI or anything like it done. I was told axiety possibly. ...but all the therapist i see say I'm too strong and happy and confident and don't show a axiety disorder to them. I don't know why I'm not satisfied... I'm talking about a large amount of symtoms ...and a high job lost .... No one is helping me keep a job due to liability of the companies I work for. I'm so tired of this.
Drs today sadly dont care
If you dont have a hammer or nail in your head at the time if tge visit it anxiety or something stupid. I got two spots in my head and they tell me the same thing its PTSD or anxiety. I'm like what ! I'm happy an show no worries or depression.. junk bullshit drs now .
FND is a disorder that is diagnosed through exclusion meaning a neurologist needs to exclude every other possible cause. They can only do this by running all available diagnostics. If they all come back clean then FND can be diagnosed. Unless you've done an EEG, EMNG, Evoked Potentials, and MRI, they cannot diagnose you with FND because you may have an underlying pathology present in one of these tests that could account for the simptoms.
Curious if you are still dealing with these symptoms 5 yrs later. I am with the same hospital system and therapy has given me some management tools not remission.
Question: can FND be diagnosed accurately within a 15 min appointment and no imaging or further investigation?
I was diagnosed with pnes in 2018. Today in 2022 I’m starting to see a OT for FND. It’s a super hard situation and it takes a lot of self patience and can be exhausting.
When does Western Medicine finally team up with Traditional Chinese Medicine?? Acupuncture, herbs, tui na, qi gong and tai chi are the right approach when ones energy system is disrupted. It has to do with the meridian system. Been there, done it.
Thank you so so much for posting this. I have only recently been diagnosed and have been ignoring it but decided to look today and this has helped alot! Thank you so much
Claire Kennedy same omg it’s so weird right wish I was normal
😮 so informative. Thank you so much for sharing. I only wish All Drs understood or had some understanding about Fnd . Im especially interested in the fact that this condition is totally treatable.
These two still seem to be placing a lot of blame on psychology which directly contradicts the definition of the disease.
Charlie Mopps - think you missed the point.
I have fnd i am in so much chronic pain, every day in my toes, feet, hands and fingers and now beginning to climb up my legs and past my knees.
It starts off with a knot type feeling usually in my calf or nerve twitches in my toes. The pain is so servere that it sends a deep dull pain in my forehead. I was so fit and healthy and only four years ago. Now I am wheelchair bound and fully dependent on others. It is soul destroying.
I just wondered if the twisting of the tendons and muscles may leave permanent damage? because it always locks my limbs at the time of pain and I have also felt numbness down one side or both sides when in pain.
My GP has prescribed me Oramorph even that at times does not work.
If anyone has similar symptoms I would love to hear from you please. Or A Neurologist please who does not mind sparing their time.
Thank you in advance.
What were your first symptoms? Did you have any problems with sleep?
Anyone here with fnd that has triggers, mine are movement and stress .
I think mine are the same triggers. But I'm pretty new to all of this. Just living with this for 4 months now.
Also my stress trigger seems to be delayed. I get symptoms 1 or 2 days after stress. But if I move/do to much like walking or sometimes even washing my hair my legs or arms are getting heavy fast and It can be painfull
Omg y’all are true angels and I think y’all may have just changed my life forever . I want to just LIVE AGAIN .
According to the National Organization for Rare Diseases (NORD), FND can be both psychological or physiological. I had FND symptoms from an adverse reaction to medication. My symptoms cleared when the dose was significantly reduced. I DNA test showed that it was caused by the way I metabolize certain medications.
What medication are you referring to? I experienced my symptoms the instant I received an infusion from an anti Tumor Necrosis Factor drug (TNF) known as Remicade, and Enbrel. Good luck to you.
I was told I have Functional tremor - Is that the same as FND?
@@CommonSenserules1981 It is a kind of FND.
What DNA tests did you take for this? Benzodiazepines gave me horrific sensory processing disorder and FND symptoms but my providers have been too stubborn to consider this.
@@okzoomer5728 I think I may have had sensory processing disorder as well. Lots of sensory overstimulation. I got the DNA test from my doctor. The company was ESA Labs.
I have been diagnosed this week and have a history of hydrocephalus and spinal DAV
What I am worried about now is, how do I know when not to go to the doctor and when to? I now feel like I will be crying wolf or have been so am embarrassed to ask for future help for pain and other symptoms.
The diagnosis feels like I am a hypochondriac. I feel confused and upset and like a fool
*you are confused. you aren't a fool.*
*i'm disturbed that nobody has responded to you. man, it IRKS me so badly!*
*you aren't crying wolf. you care about yourself and have good priorities. 1) you want to understand what you experience, and why 2) you want proper care in a timely fashion 3) you want to be clear and have clear direction and you seem to lack it 4) you don't want to be unnecessarily burdensome with someone else's time and attention*
*you are well within reason to feel the way you do. what you need is more information to better understand your condition and symptoms. some of that you will need help with and some of it you can do on your own (for example, keeping a symptom journal and learning about each symptom).*
*you deserve proper attention, due consideration, accurate diagnosis, to feel secure in all aspects of your health care needs, to feel safe and respected. don't let anyone undermine this, including yourself.*
Do people have absolutely normal Datscans with this condition? I mean no findings found!
Hello, guys!
One of my closest friends was recently diagnosed with FND. Half of his body is paralyzed, he's receiving treatment and has made some progress since then, so I'm not too worried about him. But the interesting thing about his case is that he had several dreams prior to the onset of his symptoms in which half of his body was a statue. Has anyone here ever gone through a similar experience?
I had similar..visions of going blind and being led by my boyfriend; scared as he'll. It's since occurred many times.
Sorry, couldn't watch more than 10 mins of this. Diagnostic criteria here in the UK seems to be a clear scan. BP drops, hypothermia, changes in reflex from normal to hyper and abnormalities on EEG get ignored in favour of this 'easy' diagnosis. Patients are subsequently treated with contempt if they dare to seek medical help for further disabling symptoms so they give up bothering. Saves the NHS a tonne of time and money.
Absolutely agree with this. I had very specific symptoms that could of been something other than neurological but I was only ever seen in the neurology department. After my diagnosis of FND I got sicker but I was turned away from my doctors with antidepressants and no more referrals. It was only when a very physical symptom arose that I got sent to a haematologist who diagnosed me with Non Hodgkins Lymphoma. Every one of my symptoms was that of NHL but neurologists didn't recognise that.
I'd told those neurologists I thought I was dying and they reassured me I wasn't... the truth is, I was.
I'm absolutely fuming after last GP practically gaslighted my pysical symptoms in order to group them all psychosomatic even though they found a Chiari Malformation type 1 and I already was diagnosed with fibromyalgia. The neurologist said I couldn't be treated medically. Yet FND can be treated. I have had trauma to both the spine and skull. It's a dangerous game they play because for years I was told I was depressed. I've never been depressed in all my life even with constant pain and the rest. It's a cop out
I agree to a certain extent with these replies. GP's do not have a clue. But I was seen by a pioneering consultant, Professor Mark Edwards in the UK who helped me a lot. He and another Consultant in Edinburgh developed a website back in 2008 or around that time called www.neurosymptoms.org. Check it out. But yes GPs and the majority of medical professionals in the NHS and private are ignorant of this. I have had FND since 2008 and their inability to see it as a genuine physical medical disorder even with a diagnosis from a consultant is astounding. They ignore you. But then doesn't the majority of medical professionals when they can't work out what is wrong with you. It is as though it is an affront to them.
@ciaran perry a medical system that does not parley or is too egotisticaly deficient in its knowledge of brain And spine dynamics x is deficient in its understanding of the depth and significance of life itself ,stay true to you.
@ciaran perry train your brain and body gently and in unison. The fuckry of the National death system is a blessing in disguise. Trust your body. Don't resist.
I believe my friend has this. It's been going on for years. Strokes that aren't real, seizures also no organic cause, Parkinson's like disorder, and now she's claiming back pain and inability to walk. She's scheduled for a cervical laminectomy with fusion very soon. I'm so worried they're making a mistake. She's on a heavy load of pain pills. I think her problems are being totally mishandled. I'm concerned. They also dr and hospital hop. Her last "stroke" she was told it was anxiety. Of course, they found a new hospital and doctor. Her husband isn't helping the situation. He's part of the problem
British input, mentioned dystonia or tardive dystonia so why does fnd hope who has Dr Mark Philips and dr Jon stone set up in London helping all other movement people are. Yet Dr Mark Philips doesn’t think tardive dystonia etc be not allowed to be part of the studies. We have more movements than Parkinson sufferers dystonia sufferers etc so why oh why are tardive sufferers .my medical papers states conversion disorder which is then also my last neurologist states function disorder. Is that not enough to qualify for world fnd? We have NOT HAVE GOT A SPECIALIST IN THIS Country. Tardive sufferers are yet again ignored. Causing pain suffering anger frustration etc.
Why these so-called medical academics of today all believe that standing in the corner of a room and nervously reading out the content of 150 Power Point slides is the only way to provide useful information to an audience?
Right ! Almost no eye contact and its just very robotic
My husband has something that we haven't been able to figure out. It happens mostly when he's asleep or exhausted. Moments later he wont be able to move. He can faintly speak out to me saying "help!". His body is paralyzed and I have to physically get on top of him and grab behold his neck in order to pull him up and he regains movements. He'll be extremely tired afterwards or have migraines. It can happen back to back and we are clueless on what kind help he may need. They are seizure-like but not seizures. It has to be surgical.
Look up sleep paralysis and cataplexy...?
Look up hypokalemic periodic paralysis
*sounds like sleep paralysis, it's a real trip. tell him to pay attention to inner scenery when he experiences an episode.*
Might be sleep paralysis. I have this. I also happen to be a doctor and have seen it in some of my patients.
Sleep paralysis
March 2013 I was told I was number 20 with complex FND. I had everything from functional paralysis to non-epileptic seisure. I was diagnosed after multiple tests and investigations as I was healthy but my nerves decided to act differently. My recovery was 13 months of rehab learning to function again from walking, eating and talking. I have learnt over time to identify my triggers.
So life can get back to normal somewhat? My brother has fnd
Ma D did u heal?
O,my daughter was just dianoised with this.....so her triggers are noises...loud talking,....she just turned 13yrs old tho
@@lorensworld7524 best of my wishes to you and your daughter. My daughter was 15 when diagnosed. It is still a huge battle every day. Cognitive therapy did help for a bit ( what little we were able to afford of the therapy anyway ) but new symptoms keep popping up.
Loren's World I was recently diagnosed with FND - am almost 50 now, but symptoms of not being able to button a shirt or pour juice when I was 13 and such started over 35 years ago and I started "needing" a cane at 25, forearm crutches by 30 and now a wheelchair due to balance problems. I am just now going to start seeing a psychologist & hope it's not too late.
I have both epileptic and non-epileptic seizures, myoclonus & tremors. Very hard to wrap my head around the FND when even Mayo Clinic had other diagnoses. I just did a video EEG study & was bummed out that I had both kinds of seizures so I can't go off my meds.
Anyway so happy your daughter was diagnosed early so she has a good chance at recovery. I wish her well. Original reason for responding was just to say my seizures are also caused by noise- especially with too many conversations going on at once or with commotion in general. Luckily I know this is the trigger for some of these so if I can escape the situation I don't have a severe seizure.
Best wishes to all involved in such a frustrating diagnosis for all involved!
if all this was true every er doctor and nurse would be dealing with this from the trauma of seeing all the trauma they have seen funny thing to me is when they don’t know you get thrown in this category i have been many times went to mayo clinic and had myasthenia gravis and dystonia
I had the opposite problem. I was having like 3or 4 kinds of seizures and because my EEG comes back normal between those events they more or less just kinda acted like I ws just really anxious. I had t had al tonic clonic seizures since the age of 4 but for some unknown reason, I was conversing with a friend and stiffened, went down and was quite confused when I woke up. For so reason. They had their mind made up before dong any sorta tests from the notes on The paper I left the ER with. When en route to the ER, I was I a very odd state, EVERYTHING startled me. It was weird. Lol they kinda retracted the PNES thing when I went into one trying to get in my friends car. Since then, I have learned to recognize when a tx seizure is coming and usually lay down in the floor and just knowing and knowing I’ll be ok keep me from such extreme reactions. There other types were much less scary but wow. I’m just glad my neurologist was willing to figure out what the issue was. It was very distressing g knowing something was very wrong but not being heard.
Safe home. Strong support. Good therapy. Positivity, compassion and love. Got it. 👌👍
My Gait and tremors (besides my familial Essential Tremors) have lessened since I was diagnosed 3 months ago - instead of what we thought was Parkinson's. I really want to know How I could be getting better with just being diagnosed? I'm so so very happy, I am but I Know it can't be just being told, which would prove to some that I was "making up" my symptoms before!! Can anyone here relate?
Martinez Barbara Johnson Matthew Rodriguez Daniel
What is the link, if any, between autism and FND?
What do you have against D? Please stop calling it “Effin’ D” 😡
My sister had this and sadly died last year. Intense pain and weakness. Now her daughter has been diagnosed after being rushed to hospital with stroke symptoms and intense body jerks. So possible hereditary.
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Did she fart??? 😳 beginning of video before she says excuse me! Why did they not edit that out? 🤦♀️
*why didn't you timestamp it??*
Interesting content, delivery was terrible - too many ’ums' stopped me being able to listen
Jackson Sarah Clark Lisa Smith Kimberly
Clark Nancy Wilson Scott Miller Elizabeth
I don’t want the whole history and what people think it might be. Get to the facts. I was bored 7mins in
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White Jason Thomas Richard Lee Gary
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I think i have found the answer to my problem, this is a daily occurrence sometimes multiple, breathing shallow, vison, ataxia, . i was in a severe car accident in which i stumbled around concious for 2 minutes to black out from blood loss. This at age 15. Through life lots of stress and physical trauma, Initially true epilepsy , but evolved to a state of dysfunction on daily basis. Chronic Pain. Severe meningococal infection from ears and or tick bites.
*it really bothers me when someone makes a substantial comment like yours but nobody replies. it bothers me a LOT. it's a demonstration of extreme disconnect between humans. you aren't just words on a screen. you're a live person and you should be acknowledged.*
*i suffer a lot of various conditions from various causes and i learned a long time ago that much i would have to learn to manage and cope with on my own. it's a perpetual silent grief to live incapacitated, damaged, disabled, symptomatic but that's life and it has to be accepted.*
*i hope you'll take excellent care of yourself.*
Robinson Sarah Moore Michelle Walker Eric
Richard Burton or did you mean Robert Burton?
Martin Dorothy White Sarah Clark Frank
If you are newly diagnosed with fnd, watch the newer info of the last 2 years. Some of these info are not correct any more.
Example of something that isn't correct anymore?
Reichel Track
Swaniawski Views
Can't believe it's taken this many years for me to find this video. Genuinely feeling hopeful. Also noting that the social isolation and loss of work caused by FND has been a real setback, and just grieving that.
I've been in and out of Hospitals with various 'disorders' my whole life. This FND started after I'd been put in an induced Coma for 7 weeks. I fought hard to get out of the wheelchair they'd left me in, by using Physiotherapy. Now, 8 years later, with this excruciating 'FND' getting worse by the day, I fear that I'll be back in a wheelchair due to medical neglect. Cannot get any help.
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I had to turn off after 13 mins because I was totally distracted by all the ERRMMS!. If you are going to speak publicly on such a serious subject you need to really work on your presentation. The constant pauses and erms do not inspire those listening with any confidence in what is being said.
I went to a neurologist who knew nothing about this. Cmon
I finally had Brain Scans and Nerve Conductor Tests (painful) that prove it is not all in my head but no-one seems to be able to fully understand these test results. Further tests needed have not been done and the Doctors still refuse to give me any actual help at all. yeah, Cmon.
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You both Present so well together!! Thank you both for teaching us and esp our Drs about what we've been hit with so hard and given no answers, only judgements.
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If you have this disorder, if you’re looking to pull the root cause vs. treating symptoms with drugs, start being an investigator of everything that goes into your body. The nutrition facts on the labels of foods, why would you not investigate the bean and seed oils, sugars, and complex carbohydrates
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Alot of people thought my symptoms were psychosomatic. But it turns out I just have a very strangely specific type of epilepsy, jeavons syndrome
It took mine 20 pluus years and 8 non necessary eye opporations over 2 decades. Even though im fully aware now through educacating myself znd huge open mind ...through ther my symptoms have got worse ...im now latterly fighting two fights o never chos ..ii know fnd is converted internal trauma i feel so sorry for the medical community trynw deliv3r that news
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