Care Team

[Arhea10]

Who is part of your care team? And if you are from the US, who do you have for different doctors/medical care? Just got diagnosed in January, so I'm still learning what's best!

[Hidden]

Not sure I understand what you mean by care team. In England I have my dr who has never heard of FND but is willing to learn with me. I have seen now 3 physchatrists who agreed I'm nuerological. I've seen many nuerologists but only 1 was able to diagnose FND the others diagnosed all sorts (migraines etc) which I've never had, I've seen nuero physios who couldn't help me but wrote to professor Edwards explained that I'm to severe and complex for them to help me. I've seen Professor Edwards and he's confirmed FND and that I need to be helped as an in patient as travelling, noise, concentration etc, I shutdown in seizures. From All of these many appointments that my partner has had to fight or pay private for. I don't have a care team. Am hopefully going to one more appointment to see yet another nuero psychiatrist to go on a waiting list to go into a hospital that actually knows and helps with FND symptoms. Other then that I'm on my own to deal with what comes and wait for help, one day. Don't even know how you would get a care team as the majority of professionals I've seen in last 2 years have no idea what FND is and never heard of it. Maybe someone else is more helpful then me and I can understand what you are asking from their replies. Best wishes Lisa-anne

[Hidden in reply to Hidden]

Arhea10.

First, no one is more helpful than Lisa-anne. My love goes out to Lisa-anne and Trevor. You help me a great big bunch.

Now to your question. In U.S., I am seen by primary care doctor who then refers me to specialists as needed. That group would supposedly make up my care team.

I have been evaluated by neurologists, neurosurgical specialists, cardiologists, neuro psychologists, psychologists, psychiatrists, ophthalmologists, neuro ophthalmologists, physical therapists, speech therapists, orthopedists, otolaryngology, dermatologists, etc....

Some also get seen by endocrine and rheumatology specialists and immunology and urology. The list goes on.

It all depends on your symptoms, how diverse and severe and how they evolve. I am in the 24th year of this stuff.

So sorry you have this diagnosis. So glad you have found us. We are here for you. Every question is an important one so always ask. Believe me, I keep finding more questions than answers.

Always giving you my best wishes and support.

Dan / Seattle

[Hidden in reply to Hidden]

Hi Dan and family, hoping all ok with you all, loads of love to you all, Lisa and Trevor 🤗🤗🤗🤗😊😊😊😊😊😊

[Hidden in reply to Hidden]

Lisa-anne.

You have that uncanny ability to always be here when you are needed the most. Love you dearly for that support. I read as many of your posts as I can. I always find meaning in what you have to say. I think you are right. Many of us including you are struggling right now.

Keep trying to catch a break from the action.

Always a friend.

Dan / Seattle

[Hidden]

Hi Arhea10,

Welcome! I'm in UK, My care team: Consultant Neurologist - every 8-12 weeks, GP nfortnightly, neuropsychologist weekly, 10 week neuro rehabilitation (5x physio;OT;speech therapy weekly), nutritionalists monthly,rheumatologists, ophthalmologists, pain physiotherapist, immunologist, Chiropractorr, and a a whole heap of holistic therapies.

Hope this s helps !

[Arhea10 in reply to Hidden]

It's unbelievable how much more it's all known and treated in the UK than here in the US! Thank you for sharing! Maybe I need to take a trip hahaha

[Hidden in reply to Arhea10]

It's not the general case for as for as I'm aware. This was after 6 years of complex neurological and other health conditions. I guess this made me one of of the "lucky" ones (🤔) when the FND diagnosis came as I was already being investigated by so many.

We spend every day researching what can be done, what can help in anyway etc and are doing everything possible ourselves too.

We're all al here to help in anyway we can x

[Hidden in reply to Hidden]

are you a private patient. I don't know of anyone in uk who has that much level of care. I'm glad you are getting this

[Hidden in reply to Hidden]

Some NHS, some private health care, some funded by myself. Things have been deteriorating so much and are so complex, so w trying everything possible. X

[Hidden in reply to Hidden]

Good luck then. Iv seriously thought of moving countries which is ridiculous.

[englishmumof2 in reply to Hidden]

Wow that's some team! The gp fortnightly is that set up just incase a change in symptoms or for current symptoms? Neuropsychologist what does he do weekly??? Are these all nhs? I just get proff edwards every 6 months and neuropsychologist every 16

weeks or so ! You must be really suffering to need all that help my heart goes out to you and here's to you better days 🤗🤗🤗

[Hidden]

Wow where in uk are you roughly.

Iv had to go to Australia to get scan done to prove I have sjogrens, my symptoms are sjogrens not Fnd, and that 3 years of ignoring sjogrens which can be activated by a car crash has left me with a spine I'm surprised I can walk with and parotid glands in my neck that are so eaten away by sjogrens disease they look like the surface of the moon on ultrasound. They are supposed to be smooth. I'm going to back and shake those neurologists hands fir wrongly diagnosing me then dumping me. So I would eventually be dying of sjogrens. It is supposed to be worse than rheumatoid arthritis. Kidneys already shutting down, other organs too not functioning properly.

[patti86]

like Dan, I am in the US. I have a full in depth care team. The primary is the one in charge and then I see specialists. the list is long, like many. But as Dan said, it is based on symptoms and issues. organic vs functional and so forth. For me and my very complicated case, I am seen by 3 neurologists, endocrinologist, cardiologist, pulmonologist, rheumatologist, oncology hematologist, 2 GI doctors and a PT. I might have missed a few, but thats a good start.

Im still new here. been on my health rollercoaster since 2013...this has been the latest track i have found myself on.

sending positive thoughts you get answers.

[englishmumof2 in reply to patti86]

Here in U.K. We're lucky we can see a neurologist 😂. Bless my gp really tries but sometime he's like it's probably the fnd... but if I ask for extra testing or specialist he's happy to do it!!! Xxx

[patti86 in reply to englishmumof2]

englishmumof2, im glad to hear that. often they avoid it. but I'm all about wanting proof. probably since in the US treatment is guided by tests and insurance.....requires a level of evidence based. hope things are well for you.

[Jazymay]

I live in Australia. I don't have a care team. I see the psychiatrist I was seeing before and I guess my gp if I need to.

[Jazymay in reply to Jazymay]

Just to add to that. I was admitted to neurology, diagnosed and then discharged with a week of intensive physio at home . That was it. Because, obviously it's a mental health problem!!!!!! I have to reprogram my brain. Why, when it was working fine with walking the day before it went wrong? My actual history was NOT taken into account, and it is not the first time my mental health diagnosis, NOT status, has been used to diagnose things that are actually physical. Look up "SVT", my ambos decided it was a panic attack because of the drugs I take . Then they eventually did an ECG and they themselves panicked! After 45 minutes they decided to treat me. I could have had a heart attack after 15 minutes.

I am so sick of being labelled mentally ill when my mental health is constantly improving! What does it take? A law suit?