Functional Neurological Disorder
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- Опубліковано 20 вер 2024
- David L. Perez, MD, MMSc, director of the Functional Neurological Disorder (FND) Treatment Program in the Departments of Neurology and Psychiatry at Massachusetts General Hospital, discusses FND, a condition that sits between neurology and psychiatry. In this video, Dr. Perez explores how to bridge the gap between diagnosis and treatment planning for those with FND.
Read more here: www.massgenera...
I have this. What bothers me is the extreme fatigue. Sore neck and shoulders. And fast quick jerky movements.
@Human Being I know what you mean. Have you found out what causes it ? What causes the twitching jerk movements.
You could have too much cortisol in your blood due to stress
@@samanthabonner6 I'm pretty sure my Doctors would have done tests regarding your comment. Wow you seem to know alot. Do you have FND?
What I don’t like is the doctors won’t give me an answer for last 30 years and I’ve come down to this
Try asking for baclofen 10mg in on
This relaxer also helps less need for opiates and pain killers
And cannabis I use prescribed also works well for lots of things including pain and spasms
I just want to know what’s got a hold of me ?
And would this raise my white blood cells ?????
Have a tremendous day whoever reads this
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@@northernstar5339this is prob in simple terms the neurons brain to muscles over transmitting or missfire either way
I’ve done my own research as doctors have not
And come down to FND
My home work notes are from 2016
My thoughts go way back to primary school
It took 28 yrs to correctly diagnose me- then my neurologist said “you need to find a psychiatrist”. I was put on a list and have been there over 7 months. I’m hoping I get an opportunity to see Dr. Perez someday. All I can do is wait. I’ve been stuck in my home like a prisoner with this condition. I bolt & drop & thrash & yell. When it’s over I look around to see if I broke anything.
COVID isolation has made my anxiety worse, so going out scares me. I’ve been given a card from someone at a store, to visit their church because she thought I was possessed. The ignorance regarding this condition. I blame myself because it was caused by PTSD and my brain tells me I should be dealing with this & over the trauma. I feel mentally weak & frustrated with myself. I hope to someday see Dr. Perez.
my sons lady struggles like this too, and feels just like you do, you are not alone, big hugs to you
I pray that you manage to get seen by an expert and manage find some relief both physically and mentally.
I feel the same way I hope that you are finding help like physical therapy
Great to hear someone goes all in like that on FND research.
Hope David makes some good progress.
I have FND, and I receive absolutely no help from anyone. And I've given up trying to find someone to help me.
It's extremely frustrating and depressing, suffering from this.
I didn’t get on a list till I had my therapist (not a psychiatrist), contact my neurologist & tell him I’ve been waiting a long time with no progress on the list I was on. It’s like I was being ignored.
You have to be your own advocate. If enough of us make some noise, we might be taken more seriously.
You don’t deserve to be by yourself with this REAL condition. If you had a serious heart condition, you probably wouldn’t prefer being alone.
You deserve assistance, dammit. You deserve treatment. Make noise. It helps us all.
I wish you the best❤️
Thank you. I am hoping that your medical explanation of FND will help my Attorney with my final Social Security Hearing. This has been a 6 year struggle being denied by Social Security.
Try to go for disability instead
FND is possibly a neurologic inflammatory condition possibly with genetic factors. I think it can also be triggered by certain drugs, especially those that act on neurotransmitters. It's not a psychiatric condition and in order for this field to advance they need to look beyond that viewpoint. Inflammation and changes in cerebral perfusion (aka blood flow) are thought to be some underlying factors, which also probably have environmental triggers.
I developed this condition due to a benzo prescription and a neuroinflammatory condition related to black mold or other factors. My brain and nervous system were inflamed and being rewired concerning how they worked thanks to these factors. I also have congenital autism and sensory integration disorder, the latter of which is basically a functional neurologic impairment.
Doesn't help us to tell us it's a 'psychiatric condition' that isn't going to get me or many other people well and back to normal lives. I was literally poisoned and it did things to the way my nervous system works.
Have any treatments that actually work?
What symptoms do you have? And did u get a diagnosis?
@@JamesSmith-ds2hi my husband has an fnd diagnosis. His presents like a stroke, hemipeligia of the left side. All the brain scans and tests show there is no stroke activity. And he has the consistent inconsistencies that go along with an FND diagnosis. It has been almost a year since it presented itself. No real progress.
@@lordkellith538 Omg! I have FND too. My symptoms are just like your husband's. I also blackout and have no memory at all of what happened before, during and after an episode. I have had them since 2011 (only one episode that year). I then started to get them again in 2018 to the present. The one in 2018 until now have been presenting themselves like a stroke. In 2018 my son rushed me to the ER and they ran all the test for a stroke but everything was okay. In 2019 I had another and the same thing happened (a stroke), but there was no stroke. They did find a whole in my heart that no one seen before. Long story short I still get them and still no explanation on why they happen or treatment. Good luck with your husband. Tell him not to give up and keep fighting. It will get better. God bless.
@@mariapadilla3008 thanks for sharing your story.
FINALLY an diagnosis yesterday through a Movement Disorder Specialist. Every single symptom I had written down is part of FND, and she didn't even need to read my notes to make the diagnosis. I am SO relieved and so very grateful to know I can heal..in whole or in part. I will do all of the work, as I want to get better. I have spinal conditions that are evidenced by imaging and successful minimally invasive procedures, but none of my other symptoms showed up on imaging and other tests. Thank you to all of the specialists and researchers working to help those of us that have spent years with incorrect diagnoses, too many specialitsts, and entirely too much debilitating pain and frustration. This is a really great video. I went to UC Health Cincinnati and it took nearly a year to get an appointment. If you are struggling, be diligent, be your own best advocate, and hang in there. Time takes time.
I have this disorder. I lost the use of my legs. Psychotherapy and medics are what helped me, but I’ll never be back to what I was. I can walk over short distances now, but I need a walker to walk longer ones. I have a wheelchair that I use when I know I’ll be out of the house for a long time, and I even use it at home, especially when I start shaking from fatigue. I use it when I do things like cooking, cleaning, showering, things that take longer.
I’m going through the same thing and I thought I was alone. I’m between a cane, rollator, and wheelchair depending on the day and if I’ll need to be walking more than a block. Originally the doctors thought I had a stroke and it’s just easier to say that’s what it was because no one understands FND. I still have all the symptoms of a stroke- trouble speaking, understanding, focusing, and right sided weakness. I’ve begun having migraines after the hospital stay.
@@missydelcoglin4087 sorry to hear that you are going through this. I understand your frustration. I was diagnosed with FND back in 2018. My symptoms present like a stroke as well and doctors can't seem to find anything in my scans that show a stroke. It's so frustrating because not many doctors of medical professionals know about this Disorder. I hope you can find the help you need. God bless.
My legs completely stopped working a year ago and I spent three days in the hospital. I now know that it was 'scan-negative' cauda equina syndrome paired with my spinal conditions that are diagnosed from extensive imaging. I started on a walker, then crutches, now a cane (as needed). I have much loss of balance and frequently bump into walls. I can't count the number of ER visits from my legs nearly going out again or the extreme internal electrical shock-type pain that follows anytime I try to do anything enjoyable. I also have tremors. I can't stand long enough to cook any longer and I look forward to getting back to that. I also have dystonias. It sounds like there is hope for a great deal of recovery with the work I'll need to do to get back on track.
Is it curable?
I have it. It affects speech, fatigue, thought, concentration, tremors, seizures, memory, my toes curl up and hands get shaky when tremors are bad, I get a dry mouth, my movements can be jerky, and overall come across somewhat disabled. No one has time for you when you cannot communicate properly 💩 it's frustrating and debilitating. Jack Neel a youtuber has it and I'm sure he said on one of his videos he was in a wheelchair or paralyzed as a result. Horrible condition. I got struck off from doctors because I forgot appointments even the doctors don't care or offer treatment for it. Truly Depressing
I have been havening brain fog and strong dissociation for more than 12 years. I have seen so many medical practitioners- therapists, psychiatrists, doctors- and no one seems to know what is going on. My most recent GP has referred me to a neurologist to check if I have a functional neurological disorder. But I will have to wait until April next year...
Just got diagnosed today. I am elated that at least I now have answers!
Okay there's a like a ten-year-old child that has this he went from healthy and active to not being able to walk. My question is what causes this.
My wife gets to meet him tomorrow and we can NOT wait :)
what happened?
@@RosaAFlores she actually met his mentor (Dr. above him). Lots of questions and tears.
any hope that she would be fine?
@@RosaAFlores yes! we will get better it will get to the point of remission and fnd will show when stress is high
3 years for me now. Previous TBI, 10-11 years ago
going on 7 still don't understand how this happens
NMD doc says despite having significant reduction in falls, better endurance, clearing of visual jitter and difficulty focusing, return of normal voice with Mestinon that I have FND. Pathology, abnormal labs are all irrelevant. smh
What about the pathogenesis? I feel like he's using a lot of medical jargon and not getting to the heart of this condition. It's not purely psychogenic, it's very physiological and triggered similar to epilepsy.
hate when they used all that medical vocabulary
at the end is going to be the same crap as conversion disorder and be treated like you are faking
What part of it's medical jargon? There's very little understanding of the condition and little in terms of understanding a pathogenic origin. That's why he mentions the biopsychosocial model because often it's an integration of many factors, including biomedical and psychological
I was just diagnosed with FND back in February
Did you get treatment? If so where?
@@rw6100 No no treatment, I’m struggling to get any care. Fighting for disability. I’m 5 years in and my case was sent back to the judge for completely ignoring my medical records and not giving any weight to my treating doctors statements so I’m waiting for a new hearing
@@mammadeuces6242 That’s too bad. Good luck with the new hearing. Same here, my wife is having a very hard time to finding care in our area. She has called Mass General many times, but we can’t get a call back. Very frustrating, they seem to have a good treatment program.
Have you been vaccinated?
@@joebyu yes but I’ve had FND for 20 years it was finally diagnosed after a lifetime of searching for an answer. Was diagnosed before being vaccinated
What is the best way to explain FND to a patient in layman terms?
I developed symptoms a few weeks after my 1st astrazeneca jab and 17 months later have lots of difficulty walking. Could there be a connection.
Seems to me. Could be that you already had some (subclinical) neuro inflammation or something, which otherwise would have been more or less latent.
I have fnd I always have pain in my eyes that feel like my eyes are dragging constantly. Can you go blind from fnd ? im scared Of that
What a great question my eye sight has gotten worse since developing F.N.D. my eyes switch is the only way I can describe it even though my family assured me they are can moving.
Yes you can.
My daughter was just diagnosed with FND. It took 4 long years to get a correct diagnosis. She is strong and she will beat this!🤍💪🏻
I have a Question for other F.N.D suffers. You any of you suffer really bad when going to be from server leg tremors either in 1 leg or both? Am only new to F.N.D and it is hard to find other suffers so I am really sorry if this sounds like a silly question. Second question would be ..What you you do to stop the jerking motion so you can sleep?
Try a weighted blanket but be sure to purchase the best quality you can afford. It does help ease the symptoms for me
I have fnd and to be honest I’m not getting better I actually feel suicidal but I do have it pretty bad over last four years
How are you doing now @georgieboy1958 ?
@@tiinahapponen8568
@@tiinahapponen8568
Awful
Does FND cause dysdiadochokinesia???
i think i need to swap neurologists....
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To cut a long story short,I have been having twitching in Botha calves for the last 7 months. And I have recently been told that I have bfs syndrome by a neurologist, and a doctor has also told me I have functional symptoms. I’ve been told by both that Botox won’t make a difference, and that I need cbt therapy. I’m not arguing this, but surely Botox could help, because it stops nerve endings being stimulated. Anyone got any advise? Thanks
Hi James! I have FND too and, with no positive result, they used botox to stop my involuntary movements (which are very tic-like). It was painful to get the injections in my neck, back, and arms; and I can say they did not stop the symptom in my case at least. I hope this helps!
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This taught me nothing
We have to just follow what is available to us. So long as someone is trying to help us.