"Health professionals' secret fears about FND... and what we can do about it."

Dr. Alex Lehn is a strong propionate for Functional Neurological Disorder, and he works diligently to educate other health professionals in Australia about FND. Dr. Lehn also provides treatment and support for patients with Functional Neurological Disorder in Australia. Don't miss other FND virtual Conference talks at FND Hope fndhope.org/fnd-conference/

[@kerry1233]

There is nothing pleasant about FND. It is a horrible painful condition. Largely medical practitioners are not interested, very often there is no treatment or service. Acceptance of this condition is not easy. When given a diagnosis, patients are told to toddle off and accept this without any advice, treatment or psychological support. In my opinion this is shameful and cannot be excused.

[@aussierando9582]

I was diagnosed with FND 7 years ago after a car accident and I live in Tasmania where there is no support. At first the hospital here was horrible but thankfully I now do have a good pain team who are good. I go to physio twice a week doing massage and hydro therapy which helps. But now I’m frustrated because my doctor retired and trying to find a doctor who one is taking on new patients and two who even knows what FND stands for is impossible. I would love to start a online support group but don’t really know where to start. I did see dr lehn about 5 years ago and he is a great doctor but I live too far away. After watching this I’m going to get in contact with him again and hopefully do a Skype appointment and hopefully he can help me find a Tasmanian doctor who understands FND. If anyone want to message me please feel free. Maybe just maybe talking to other people might make us FND strong

[@marjoriewillis5120]

I have been diagnosed with FND. I have just been refused has an outpatient as I do not fill the criteria. Where do I go from here it is so good to listen to you and pray that this condition can be accepted by all health professionals and funding for FND. I do feel lost now.

[@mummytut8255]

I live in Queensland, Australia, I'm 38yrs old with 3 young children aged 12, 9 & 5. My son , the eldest has down syndrome which has challenges of it's/his own. I was diagnosed with FND about 2 & a half years ago when i presented to emergency department with a stroke like episode/right side hemiparesis, my neurologist was rather rude & unhelpful. Told me, 'You just have FND, do physio ect & you just need to learn to live with it'. Now currently today, i have to use a walking cane & a wheelie walker & I come so close everyday to ending my life as the stroke like episodes, I have been recording them as I'm having roughly 5 massive attacks a day, they are painful in a strange way that i can't quite explain.. And I'm now losing my sight in my right eye with a big lump in behind my eyeball. I can no longer do anything with my children..😥 and I have absolutely no life as because I'm always in a stroke state very badly, people stare at me so I don't leave my house. My gp is more compassionate than my neurologist! I have not only FND but also have heart disease, diabetes, atherosclerosis, fibromyalgia, emphysema, asthma, tendonosis riddled in all my tendons, I'll be here all day if i note everything. But FND for me is the one thing that is destroying me the most & would be the thing that would cause me to take my life. Who wants to be constantly in this state & feel like an utter invalid & a burden on the people needing to help me in daily life. We need a cure as this is causing people to leave this earth.

[@Mamakathy-uh9xf]

Has any doctor considered mitochondrial disorders such as MELAS?

[@mickeyj9771]

I have FND and I can honestly say I was shamed and discarded by the public hospital they told me not to come back. If it wasn't for my GP ide have no1 to help me. Even my wife resents me and wants out of our relationship. this condition sux I'm 38yrs old I was fit and healthy and can longer even vacuum my house without having a seizure/attack , can't even play with the kids that requires physical effort. I have nothing left , just tired sad

[@brianbordenkircher52]

Thank you for all you share for us FND patients!

[@yvonnedouglas4637]

I'm in the UK and in the Northeast, asked to see Jason Price, just told it wasn't allowed as out of my area. I was diagnosed at Hospital after 2 yrs and now have fnd for about 10 yrs.

[@TheDonnellymarie]

I have got this unwanted condition. It is very annoying and causes me a lot problems in everyday life. It cause me to feel utterly miserable and employers do not like to take someone like me on has it costs a fortune on the insurance. It is unfortunate but good to know that people care.

[@ivy2415]

Thanks for uploading this. I am currently in the process of getting a diagnosis for what my neurologist suspects to be FND. I have motor and vocal tics that manifest as coprolalia and echolalia. I can suppress my tics if I focus, but anxiety-provoking situations (e.g., talking publicly) makes this almost impossible at times, and it is very exhausting and uncomfortable. I used to have non-epileptic seizures that were traumatic and painful, but thankfully they have subsided. Im hopeful that the future brings more understand and acceptance through education in clinical and research sectors. Currently, I’m doing a PhD and I have not disclosed my challenges to try and get disability support from my university (especially with public speaking, which is expected and very difficult for me) due to fear of discrimination. If you are choosing to specialise in this area, please understand that people didn’t ask for this disorder, it is disabling and very difficult to manage. Realising that and showing empathy can go a long way. I hope that patients and clinicians and researchers can continue to build trust with one another moving forward, to help in the acceptance and treatment of this disability.

[@christineallport5483]

I really miss working with Dr Alex and his team. His program which includes Simulation patients (which I was privileged to be) such an important research/education program.

[@amymaria5021]

I was just diagnosed with FND 2 days ago, I have been pass from doctor to doctor for going on 3 years. I really felt like most of the doctors tried to help however they did cause a lot of fear and stress over the unknown. Thank you for the information.

[@darrellmackinnon452]

In Canada they need education on N F D

[@SiothaVest]

I need this video to end up at any "neurological center of excellence including ERLANGER & Vandy in tn!

[@cefndrewrexham8213]

I have been diagnosed with FND in December last year .Finding it hard getting dr that knows anything about FND .The dr at hospital that I saw in AM dept just told me its something I have to live with sent me back to my GP .I have great GP but he doesn't know anything about FND .I would love to met another person that has FND .I'm from Sydney Australia

[@annieinwonderland]

Hi an Australian here in Toowoomba.

[@brucemjson]

Neurologists have clinically found ataxia and suspect FND. I'm really struggling in life, and there is not much to work with when it comes to understanding, I've been laughed out of hospitals and told not to come back. I'm so weak. I find it hard to walk and am doing much less cause I can't 😭 even vacuuming my home makes my arms burn like I'm at the gym!

[@joannacullen-np8vq]

I think its a great new attitude! Long time coming

[@bigmamma6946]

Hi m a Kiwi, living in Christchurch, New Zealand. I was diagnosed last year, after 30 years of around in circles. I have had no G.P or neurologist or physiotherapist , or pain management clinic telling me what F.N.D is. My psychologist diagnosed me after 2 years of therapy. Then I was discharged from the service. What do I do from here where do I go what should I be doing to help my self.

[@thegem69]

Thank you for this. I was diagnosed a year ago this month. I'd be very interested in participating if possible.

[@maviccolarina8615]

I am suffering this ilness now starting July 30 until now 😭

[@SiothaVest]

Us too. See my newer resources above to find providers that understand the fear and loss of dignity when diagnosed

[@mtaylor766]

I was diagnosed yesterday by a neurologist in the UK, midlands, and blatantly just td yes it'd FND and you are now discharged. Nothing else, just showed off like a nobody that matters. I now feel like I am worth less as a human with a tag on me people want to stay away from.

[@joannacullen-np8vq]

Worked as a peer. Would be fantastic if dr disguised themselves as patient every day get trust quicker people well quicker!

[@Solomon_King_]

Thank you for trying to help us, maybe there is some light at the end of the tunnel after all.

[@yvonnedouglas4637]

UK doctors its 10 minute appointment, seen 2 neurologists, just sent me 2 yrs physio by this time doctor never knew who sent me. I started to lose my balance in the beginning.

[@sharonclare3289]

Is there a team of medical doctors specialising in FND in Adelaide, South Australia? My daughter has it and can’t walk. She has had every symptom mentioned and we have had awful experiences within Flinders hospital and Royal Adelaide. They dismissed her as a psych patient and said she was faking. She’s a single mum and other than myself, has minimal help through RDNS. Any help would be greatly appreciated

[@zaradonnelly2658]

I have FND for a very long time but the hospital i was with are not very helpful or know what it is. they do not know the cause either

[@joannacullen-np8vq]

Ok fnd diagnosis then what? Good food exercise learning to be happy again. Like falling off bike and getting back on?

[@joannacullen-np8vq]

People withfnd are more scared than drs.

[@danielmeixner7125]

Ikr. I type up my history/current complaints to bring to every new appt. I calmly explain any problems I have with their communication. I ask appropriate questions. And still it gets me nowhere, not even being treated with human decency as a patient. And yet the healthy medical professional needs my sympathy and consideration? I have no family and I can't work, but I'm supposed to censor my frustration and despair? I wonder if oncologists and palliative care doctors think the same about their patient interactions.