Prof Jon Stone - Functional Neurological Disorder & MS - looking for a treatable cause of disability

Professor Jon Stone - Functional Neurological Disorder (FND) and MS - looking for a treatable cause of disability

[@andrewm514]

And then theirs me! Diagnosed with FND and yet over ten years later diagnosed with PSP! Thank you!

[@mtaylor766]

Got a diagnosis of FND today and I am so glad I found your video.

[@loveconquersall143]

I was diagnosed with this today by a neurologist. I am so scared. I used to be able to go for a run every day, now I can barely walk. I also have MDDS too. There's no treatment clinics or physios for it here where I live - and just that thought alone is distressing. I SO hope and pray that eventually we'll have some knowledgeable professionals here that will be able to help those of us with this crippling & depressing disorder.

[@oliviawesterbeck1253]

How are you doing now?

[@coramerry3887]

Thank you Dr.Stone for your research. I have FND diagnosed 2 years ago.

[@carajones6378]

I was diagnosed with FND on Wednesday, this video has been so helpful. Thank you

[@naomi5495]

Why are physicians still referring to chronic fatigue as a psychiatric disorder when we know there are biochemical markers of it? Particularly ion channel disfunction. It’s an irritating assumption.

[@dermlover1]

Anybody here have FND with sensory symptoms? Like numbness, tingling, prickly sensations, heat sensitivity?

[@Bhappi137]

He explains this so well, I was diagnosed with FND 2 weeks ago and given a referral for an MRI which will take I’m told ‘months’ the Doctor said don’t worry try not to get too stressed , and that was it , no treatment plan no idea what this entails and now my symptoms are changing, I’ve developed weakness as well as my tremor, a terrible tiredness and a buzzing inside my muscles, I’ve booked another appointment because this is so debilitating not to mention scary

[@andrewkennan8812]

I have Panic Disorder with disabling symptoms and just recently also diagnosed with FND, so what I would like to know, who actually gives you treatment for these 2 disorders

[@Foxy-el1pk]

My neuro psych has just diagnosed me with FND. I'm in Australia

[@maddycorper4893]

Chronic fatigue syndrome/ME is not a psychiatric illness, it is a complex neuro-immune disorder! Chronic fatigue might be a symptom of a psychiatric illness. Please make this difference in your next lecture? Thanks

[@samhall1452]

Regarding functional gait disorders, do you ever see impairments in running but preserved walking? Or does this more point to another neurological condition?

[@gh-wt2ip]

I have both ms and fnd its awful, i was also told fnd 98% as my first diagnosis, then they done brain mri and lumber puncture and found out I have demylination lesions and postive o bands I have RRMS with a fnd overlay

[@lindseys8039]

Do you have rrms or ppms? I have already been diagnosed with FND, but they’re doing the MS tests now:/:/ I wouldn’t wish all of this on my worst enemy.

[@designdestinyonline]

Thank you for your comment. I have been diagnosed with MS for 30 years. I have lesion on the brain in the MS region and I originally had spinal tap with elevated white cell count. I’ve seen sooo many drs. I lost my large intestines 10 years ago. They just stopped working. I have seizures, left facial palsy, poly neuropathy and chronic fatigue as well as a list of neurological disorders. Recently my neurologist retired. My new neurologist only met me for 5-10 minutes and didn’t even consult with any drs on my team. He also disregarded all psychiatric professionals who all agreed this is a true medical problem vs conversion. I am not feeling comfortable with this new FND diagnosis especially after 30 years. My primary dr who is quite a great dr has been my dr for 2 decades and does see my problem as MS as well as all my drs in my team. I wish I could see why this new Dr thinks FND is appropriate

[@citizen3000]

@@designdestinyonline FND is an extremely dubious diagnosis. Sadly the profession has been trying to push it, hard, for a long time.

[@Lillymae-gq4oe]

This is very helpful, I’ve been diagnosed with fibromyalgia and I have spinal cord injury, thats more than 20yrs old. I often wondered if some of my fibro symptoms were FND related. I get sudden headaches that trigger bad shaking of my body, I loose control of body function of my legs to the point of falling down, and sometimes bladder. MS and epilepsy have been ruled out. And talking at times I trip over my words, my fibro fog gets extremely bad. My whole body gets shuts down. Full total system overload. And stress is a huge trigger for the tremors I experience. I’d like to make comments on the Australian FND Hope, but they’ve disabled their comments. Can a GP diagnose FND, or does a Neurologist need to. Our hospitals are back logged with a 18mth to 2yr wait to see a specialist. You’ve provided a plethora of crucial information on this vlog. Thank you.

[@Sumeria_9]

Sounds like stiff person syndrome

[@naomi5495]

Stone says that FND is probably misdiagnosed as MS more often the other way around but didn’t give any evidence/stats to indicate that. Are there stats somewhere to indicate this?

[@buzz4205]

Search on pub med fnd and Ms, you'll find a study that supports this (not 100% sure cause pub med is hard to understand ahahah)

[@marinaletina3685]

Got a diagnosis lately.

[@sebastiancampos4197]

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?

[@meshezza]

Funny you say that, my daughter was having lots of strange dreams and nightmares in the week leading to her getting FND she was also having auditory hallucinations and could hear people chatting

[@lynnwalker9935]

Iv had FND 11 years not every FND can be completely eliminated The symptoms have many many changing symptoms

[@meshezza]

My daughter has FND but she doesn’t have symptoms constantly like most people I’ve seen. Her symptoms come and go. She can be paralysed from the waist down for an hour then get up and walk (although her legs will feel fuzzy) and then another day. She can be deaf for a couple of minutes then be okay. She can have 30 seizures then have none the next day. She can have gait problems for a couple of days then be fine. She sometimes has outrageous tics like she has Tourette’s. She can have severe joint pain then be fine and lots of other symptoms. Does anybody else have FND symptoms so inconsistently?

[@privateprivate4384]

Yes!

[@JanaShakespeare]

That sounds just like my daughter, only without seizures so far. I've known a few people with FND, and they all presented like that. I can see thinking it's constant with gait disorder symptoms, but think about seizures. They don't go on eternally, but eventually stop. My daughter can be paralysed one moment then give minutes later bounce up and walk, which doesn't help people believe it's real when they see it. Sometimes it slowly drags away, and sometimes it's gone in a flash.

[@stoms8238]

I’ve been diagnosed with this last night and today my diaphragm isn’t working feeling shortness of breath. Fatigued feel like I can’t feel my feet.

[@avonneyang8402]

Be careful! One top neurologist at Mayo clinic ignored my abnormal labs and claimed I only had FND, but it turns out by genetic testing that I actually have a rare genetic disease and so be careful!

[@MS-qe8tz]

What is sensory functional disorder? Cannot find much information my daughter doesn’t have any gait, or any other symptoms like tremors etc but neurologist says it’s sensory functional disorder. Her main symptoms are numbness and tingling all over at different times and weakness in legs and arms and pain like burning and she gets hot and sweats at night

[@yeseniavalenzuela7370]

Hi, my daughter also has those symptoms and has been diagnosed with FND and Dysautonomia.

[@kimsantoro447]

FND has a wide range of symptoms

[@amandacrowder840]

Has she been ruled out for dysautonomia and small fiber polyneuropathy?

[@citizen3000]

Has she been investigated for small fibre neuropathy?