Functional Cervical Dystonia ???

[PrincesspreRaphaelit]

Does anyone have Cervical dystonia like symptoms that have been identified as being Functional ?What helps manage symptoms ?I have trouble eating anything that’s not soft has anyone found any solutions ? (I cannot approach my swallowing difficulty with my doctor because I was told that I invented a movement disorder to avoid eating )Whole team thinks I have made this up to avoid school ,I do not know what to do .

discharge letter has questions marks in it .

My medical advice from hospital was get a hobby (literally)

Physio asked whether I’d decided to copy this

Doc said in letter only exists when being examined /in docs presence which is not true .

I was given sedatives which I an allergic too and put me to sleep

Gp is asking safeguarding questions .

No one listens to anything I say

Being sedated all day is not it

[Hidden]

You're not alone in having doctors doubt your symptoms and you don't have to be young for it to happen. I'm 69 years old woman having trouble with many foods except soft ones. I was told by a neurologist it's called "Bolus Hystericus", an outdated term proven wrong by a study. All but one of the subjects had a real physical (organic) cause. Some of the subjects got better but when it doesn't go away for a long period of time there is an organic cause.

It was demoralizing, to say the least, to have a swallowing assessment that clearly showed tongue based movement was lacking and have it dismissed as if I was am a hysterical female that needs medication to calm me down. Doctors shouldn't be practicing who jump to conclusions. You can demand a swallowing assessment.

I have other types of dystonia and head, neck and vocal chord stiffness that is affected by something, even breathing, but it hasn't been diagnosed yet. I find out more on the internet than the doctors. Now waiting for an MRI. I hope you will continue to document and do research until you have answers. Don't give up and I hope you have family that is supportive.

[Van604 in reply to Hidden]

Hi. Do you know about the lectures that the FND society is putting on? They are free to watch live or you can pay a small fee for access to the recordings. I've watched several now and what strikes me is the disagreement between the doctors. Some are clinging to the old Freudian/hysterical theory, but some are now trying to find brain-based explanations. They are also beginning to acknowledge the harm that is being done to us by misguided doctors. It's making me feel a lot more hopeful.

[PrincesspreRaphaelit in reply to Hidden]

Thank you for your support and advice ✨🦋✨I am sorry to hear that you have had a similar experience with doctors too.

It seems everything that women present with they are prepared to label as hysteria .You are right they should not just to jump to conclusions .

Yeah I will try researching too.

Yeah definitely .

I hope everything eventually gets resolved with compassion and the doctors stop dismissing you .

[Hidden in reply to PrincesspreRaphaelit]

Thanks 😊 I have a strong will and I'm not letting go of what I know to be true or fight to get what I need. Women sometimes get a bum rap but we're stronger in so many ways. Keep remembering that. I know a lot of good men who listen and care too. Take care...I'm in BC, Canada by the way.

[Van604]

Hello. I'm sorry to hear what is happening to you. The physical symptoms are bad enough without all the other nonsense we are subjected to. What I found most ridiculous was that my problem was being put down to "stress", but it was the way I was being treated that I found most stressful! I too am an older woman - I was diagnosed at 55. At first, I was told it was dopa-responsive dystonia or Parkinson's. I was put on levodopa and my symptoms improved a lot. Two years later, I collapsed and they said it was "functional", and now everything else has been thrown in that bucket (even though a heart defect has now come to light). My neurologist and movement disorders specialist discharged me and I was stuck with a neuro-psychiatrist who believes all women just need to get a husband and everything will be fine. I'm not joking. So I've moved to another country and am waiting for an appointment with a neurologist who doesn't believe this is all psychological. His name is Dr Mark Edwards at St George's hospital in London. There are a couple of others - Jon Stone and Alan Carson in Scotland - who are also doing some great work in this area, trying to educate other doctors. There is also an FND forum on Health Unlocked where there is a lot of good information. I hope this will make you feel better and help your situation.

[PrincesspreRaphaelit in reply to Van604]

Thank you for sharing your experience it is good to know one is not alone .I hope your appointment with the neurologist goes well and you get the compassionate treatment you deserve 🦋✨🦋It seems like once they make their diagnosis they refuse to take into account other stuff and admit they are wrong .

Your heart defect should mean it cannot be functional .

Exactly!!! You said it perfectly .

How they treat people can causes stress ,but one cannot tell them that .

They just love dismissing women .

If one gets upset like one should it adds to their hysteria diagnosis .

I hope you never have to in counter someone like that again .

Omg -I do not want to believe he said that but can .There is a Instagram that features medical horror stories like that sarahgraham7writer .

Thank you so much I’ll research it 😊✨

[Hidden in reply to Van604]

Thanks so much even though I'm in another country, Canada. It helps to share these judgement calls by those who have no idea. I'm sorry you're going through it too. Much of the drain on the health care systems is their fault. We have to keep going back over and over. Good doctors are rare. Levodopa worked for about a year then didn't help much. I was told to go off of it. I think I have MSA-C so the MRI will help with diagnosing. HI has helped so much. Take care!

[Van604 in reply to Hidden]

Hi rideabike. I was in Vancouver and was treated very well until I got the "conversion disorder" diagnosis on my chart and then everything went downhill. After that, everyone started treating me like I'm crazy. I even lost my job, once I was switched from a neurologist to a neuro-psychiatrist. I had to see a psychologist, just to cope with the way I was being treated by the medical profession! It was he who advised me to move to England and start again, with a neurologist. I hope all goes well for you with the MRI and you get some answers. What is HI, btw?

[Hidden in reply to Van604]

I meant HU Health Unlocked. Sorry I often hit things on the keyboard wrong. What exactly is FCD? I've never heard of it. I have had a sore neck for so long but don't have any twisting and muscle spasms. He said it wasn't dystonia, essential tremor or PD so it left me with nothing to go on. I do have deterioration in cervical bones so it may not be connected to the other dystonia symptoms in leg/ankle and arm.

[Van604 in reply to Hidden]

FND is functional neurological disorder. New name for conversion disorder. It's what they diagnose you with if MRIs etc come back ok. It basically means "we don't know"!

[BlanketTime1 in reply to Van604]

i wish they would just admit they don't know! it's so upsetting. many neuro illnesses progress and the earlier it's caught, the better the prognosis. ever notice how many of those, 'i had a headache for 2 days and a numb finger, went to the ER and was diagnosed with MS that day' stories involve men?😤

[Hidden]

Mayo Clinic in the US has some good information about it and it's nothing shameful so I don't see all the hype of doctors insisting it is. There are some experiences of people who have it that you may find comforting.

mayoclinic.org/diseases-con...

[Van604 in reply to Hidden]

Thanks for this. Yes, I agree, it's nothing shameful. But a lot of doctors who aren't neurologists and don't know much about the current theories on it, like ER doctors and GPs, still believe it's psychiatric and treat you like a fake who's just looking for attention. That's why it's really important to see the right neurologist who has an interest in it. Luckily, some FND neurologists are now making an effort to educate other doctors with articles and lectures, so hopefully attitudes will change.

[Hidden]

To Princess and Van604...I agree that the hardest part of disease if putting up with doctor's BS even more than the disease itself...sometimes. I love that we can share experiences so we can put up with it so thanks to both for your input.

[Van604 in reply to Hidden]

Hi rideabike. Did you know that there is a dystonia support group in Vancouver? I am a member and it's a great bunch of people who get together to exchange helpful tips on living with dystonia. We were meeting in person but are on zoom now. Details are on the DMRF Canada website.

[Hidden in reply to Van604]

I didn't know that but I will contact you and get details after my MRI report comes back. I am stressed about it but on Sunday it will be done. Waited quite awhile.

[Van604 in reply to Hidden]

OK, best of luck!

[PrincesspreRaphaelit]

Yeah !!!

[Tiedye]

Try the dystonia medical research foundation web site. You need to find a dystonia neurologist. They have a page you can search for dystonia specialist in your area (hopefully). We’ve all been through doctors not understanding or uneducated, sometimes it’s worse than the disease. There are great dystonia specialist that are compassionate and can get you some help. Stay strong, you’ll get through this!

[Hidden in reply to Tiedye]

Thanks for the encouragement for us all.

[BlanketTime1]

ahhh, freaking doctors!😡 every time i see 'functional,' i get suspicious, especially when it regards a woman. i saw a neuro for 6 years who was a researcher and really really REALLY wanted me to have his pet research project illness. i kept testing negative for it. after 6 years, when i finally started to question him, he told me it was psychosomatic and i needed to see a shrink. i saw the psychiatrist, who immediately told me my symptoms weren't psychosomatic, though to be safe (i wanted relief by that point) i saw her for 3 months. when i told her i didn't think i needed to keep going, she said she expected me to realise that sooner.

mkay, fast forward to brain scans showing something wrong, but inconclusive so far and a spinal mri showing lesions. yup, lesions on my spinal mri after the other guy told me it was in my head.

i just took a breath to calm down... but really. how does he know it only happens when he's around? does he have a 24 hour camera crew following you? SMH

i'm so sorry for the over-drugging. one of the things that set me off with the neuro i fired was i didn't want him to just throw pills at me. i was getting steadily worse (still am, btw) and wanted to know what it was so i could fight it.

all i can say is please find another doctor if you can. telling you to get a hobby reminds me of women being told to knit. seriously.

stay strong.