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40,150 Views ā¢ Apr 12, 2023 ā¢ Click to toggle off description
Views : 40,150
Genre: Education
Date of upload: Apr 12, 2023 ^^
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RYD date created : 2024-05-09T07:08:47.85027Z
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YouTube Comments - 245 Comments
Top Comments of this video!! :3
Oh my God I knew it..... you have no idea how good it feels to hear someone explain EXACTLY what I've been trying to explain to everyone who never believed me.
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I am one of the neuroscience nurse specialists for the Brain and Spine Foundation in the UK. We get calls for emotional support and a need for understanding. Thank you for sharing this valuable information as there is very little support or resources for FND in the community. However things are slowly improving
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No trauma here, just a burnout. Was misdiagnosed for 3 years, hospital in an out, disbelieve, relationships ended, it's been hell. And I'm one of the "lucky" ones, my FND comes in cycles, in between I feel great but when I get an attack, not so much.
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I was diagnosed yesterday with FND, which was actually a huge relief - the validation of my symptoms and that it is not early onset dementia (Iām 53, with a strong family history of dementia on both sides). My Neurologist encouraged me to educate myself but I am still in need of a treatment plan. Interestingly, besides having cPTSD, I have hEDS, another poorly understood, diagnosed & treated condition. In the little research Iāve done, I found that there is a correlation of 3 out of every 5 patients with FND also having hEDS. This suggests that the problem pertains to more than a mind & brain, but also has a body wide aspect, possibly pertaining to neurons & connective tissue. I would appreciate a further discussion exploring this.
Thank you for your mind saving channel & podcasts. Iām very grateful for the work you do.
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I was diagnosed in 2014 with pseudoseizures, then non-epileptic attack disorder (NEADS) then Functional Neurological Disorder (FND) which is from my understanding, the same diagnosis just with updated terms / names for the condition. Your points from the 8 minute part onwards hit hard. Thank you for your words and the respect you have shown for myself and people like me in such a refreshing way. I've saved this video so I can show those people in my life that can explain me better than I feel I sometimes can.
12 |
Hi. I have been in hospital for two months and been diagnosed with FND. I had a black out and fell down the stairs and was unconcious for 1.45 hours. I have lost use of my right leg and right arm, my arm is now ok. However my leg is not, i am in a wheel chair. I have had every scan going and nothing found. Then i saw a doctor who done one test on me and said i have FND. He asked me about past trauma and took mind of my leg by moving my left one and it moved with it, soon as i try to move it myself by thinking i cant. Watching this video has really helped me and has actually convinced my family i am not making it up. Thank you so much for explaining it in the best way i have heard. I will be watching you alot now. I am Dean Moore from Wales (Tom Jones Country) in the UK
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Got finally diagnosed after a miserable few years. This video was amazing, I for once am excited about life again!
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Thank you soo much for sharing this. I've been needing this for 6 years. Everything you said is all soo true. Dr's run all the tests to rule everything else out, then they just call it fibromyalgia or dysfunctional system, and then you're on your own with the unknown, and your life consists of research . I'm soo glad to have subscribed to you and to find this video today.. I wish you were my Dr. Your rhe best.
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Two and a half years with FND debilitating symptoms! All tests been normal yet I've not been having a good time. My symptoms started after a neck choke, thank you for this video ā¤ keep fighting and pushing x
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I also have hEDS, but my trigger is CRPS type II (the presence of nerve damage). My tremors & subsequent myoclonus started 6-8 months after getting CRPS (post bunion surgery & nerve damage from tight cast, which the ER refused to remove due to crushing pain and blue toes). I have also considered that my myoclonus and tremors were caused by antidepressants they gave me as part of my pain med 'cocktail' for CRPS pain since there was a correlation between starting them and the start of those symptoms. First I was told I had "conversion disorder," & I saw 3 psychiatrists which ALL said "NO CD." If it was CD (psych), then I wanted to take care of the psych issue. However, going through CBT, PT, med regimen (total 38 different meds), ketamine infusions, HBOT, and of course therapy, they have not resolved. I think they think it's psych because the sx are intermittent. However, I also have other comorbidities (central sensitization w/ allodynia & hyperesthesia, dysautonomia, POTS, MCAS, arrhythmias, anxiety/depression) from CRPS, which MDs either don't understand or contribute to CRPS....thus, 'it's in your head' &/or 'it's in your brain.' Either way, no one can rule out or diagnose anything and there is no treatment, much less cure. But for CRPS, I would not have these symptoms! My MDs always elude the fact that I have ongoing CRPS. My CRPS is NOT in "remission" and still meets (after 7 yrs) Budapest Criteria! So to be now given a FND (from CD) and thus I DO have a known neurological condition, which is ignored. Dr Sullivan, I am open to your knowledge of patients with CRPS & FND. Thank you.
7 |
I started to have jerking movements, spasms and blackouts. They got so bad that I had to be admitted to hospital. I had various tests and then a neurologist said I have FND. When I was due to be discharged she asked are you concerned about anything before you go home. I told her I was really worried that I'll get all the symptoms again. She said, well you only have 1 year to live and don't call an ambulance š®. Shock horror. The charge nurse came over when she left and said just ignore those remarks. Talk about being worried when I was dischargedš¢. My sister had to assure me she's talking nonsense
3 |
Thank you for this video. It is rare to come across well informed, experienced and compassionate concise information regarding FND. I first suffered FND, conversion disorder when I was 16. Severe jerking, tremors through head and left limbs. The initial 'bout' lasted almost 2 years until the movements simmered down gradually over that time period...from jerking to tremor to no movement. I had 4 'relapses' over an 8 year period in which the severe jerking returned, and would last anywhere between 6 to 10months. 21 odd years later I have had to confront a lot regarding my childhood and lifetime of mental health disorders. Currently diagnosed with CPTSD (im a victim of reptitive sexual abuse, grooming, normalised, incest from ages 5 to 15), MDD, ADHD, chronic pain and others. I still suffer from physical symptoms that I experienced during more severe periods of FND, e.g. muscle weakness, feeling loss or detatched from limbs, slight tremors...however I have no idea how much other variables such as my various disorders, mental health issues, living circumstances, development, stress etc compund on these FND like symptoms. I am not sure if the FND still persists after all these decades but manifests differently?
Anyway thank you again for this video. Solidarity and sorry for anyone suffering or who has suffered FND. Hope there is more FND education, awareness, research, treatment etc in time
3 |
Omgā¦ thank you for making this video. I was just diagnosed yesterday and I am blown away. I was diagnosed with somatization disorder in the ER when I went which infuriated me. I also have BPD, CPTSD, ADHD, an ED and a lot of physical pain. All of the symptoms started after my concussion in January.
9 |
Always so insightful and presented with such warmth. I have ET and CD. Have had ET as long as I can remember and CD developed about 8 years ago - I'm 52. Tried botox for the CD and got a VERY sore neck. No meds work, tried Propranolol (20-90mg per day and Primidone (helped a little but was so wasted I couldn't function) . Am a bit over it all but your info inspires me to look deeper and elsewhere for relief. Thank you Dr Karen for all that you do. So grateful.
5 |
THANK YOU! An exceptionally clear, comprehensive, and yet concise, explanation of FND - a little understood and therefore elusive of diagnosis condition. In months of investigation to "label" my symptoms,, this is the best snapshot of FND I have encountered: bravo!
4 |
30 years of CFS and fibromyalgia here. I know you're correct on this.
Thank you Dr Sullivan for you careful attention to your patients. x
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Thank you so much i was diagnosed in july i spent 19 days in the hospital thought i was dying i end up being bed bound . Hospitals is a trigger of mine so being there was making me worse worse they ruled out everything else and said i have conversion disorder from too uch anxiety taking over my body . I was angry lol because to me it sounded like its all in your head. I decided to find videos so i can understand what is happening to me found you so thank you for caring. Been in therapy a long time for cptsd so i can see it make sense but its terrifying.
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Thank you for this video!! I went into the hospital 2 years ago with Covid Pnemonia. During my time I was intubated, my heart stopped, and was in Icu. 2 years later I still have left hand tremors, weakness in my left leg and walk assisted with a walker. And.. developed seizure disorder following treatment. While I know that's a lot, it happened after my husband had been diagnosed with stage 4 lung cancer with mets to his brain. So there was trauma before I got sick with Covid. Just knowing a name for what I think I have been dealing with gives me hope!
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Really glad Iāve found this. I suffered a very traumatic experience some years ago from a waterskiing accident. It left me with partial paralysis for along time. I have extensive sciatic nerve damage and a prolapse disc. My mental health has become quite poor over the years and Iāve developed fibromyalgia, ankylosing spondylitis and arthritis. Iām having days where my body shuts down with fibro symptoms, and my body will literally shake like Iām having a epileptic seizure. I donāt have epilepsy or ms, however my ability to walk properly, my speech is unrecognisable at times, and certain parts of my body will either spasm or I have uncontrollable shaking. Iāve addressed these symptoms to my doctor, which heās got me to have a CT scan, with no foreseeable cause as to why I have these debilitating symptoms. Iāve noticed when Iāve have periods of stress and high levels of anxiety my functioning of movement is crippling and my mind just shuts down. It feels like Iām experiencing, too much information overload and my brain ceases to function. I need help to walk during these difficult moments and my body feels like itās not willing to work for me. I was sexually assaulted 13 years ago, and all my symptoms have gotten progressively worse. I havenāt seen a neurologist yet, Iāve only just stumbled across this video, so a lot, if not all of what youāve just said resonates with how I feel and experiencing. Thank you for sharing this. Iāll be looking into being assessed for FND.
6 |
@susanmann5286
1 year ago
I am so worn out with professionals asking me, "What is Functional Neurological Disorder" is. This puts me in a position to educate them, while they basically stare at me, in disbelief.
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