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[CaptainSafetyBake91]

In 2013 I had a seizure and after that I has fatigue and my eye would twitch. I thought then I just needed sleep that will fix it. But it did not and in 2015 my right arm started randomly moving. From there it progressed to my left arm to my neck and jaw. Then my legs started to drop and my hands and feet would curl. I went to a neurologist in the town I live in and because my systems would show randomly he said I was faking it. My condition is weird there are some days where my movements are not acting up and I look normal. Then are days where it is violent and I am moving so bad my arm hits my head. So I went to see another neurologist and that doctor called my condition Functional Movement Disorder and sent me to mental therapy and physical therapy. Which did work for me plus the therapists were not specialized in my condition. So I went to john Hopkins in Baltimore MD and the neurologist there called my condition FND. This doctor thinks it is odd that my doctors before ignored the seizure I had in 2013 and my history of seizures when I was younger. I was born a premature baby I was a pound and a half and my airway was the size of a coffee straw. So they had to do reconstruction on my airway using a piece of my rib. But also being premature I had seizures but there was period in my life when the seizures stopped and then in 2013 I had a seizure. So this new doctor I am seeing now says I have FND and says he has specialists that dealing with my condition. So I hope this time around I will be getting some where. My condition also causes incontinence so I have to wear diapers but I haven't let that put me down. I do youtube videos on incontinence and diapers now and hoping to help people going through the same thing.

[Batty1]

Sorry to hear about your early misdiagnoses some doctors shouldn’t be doctors….. I go to John Hopkins University for Psoriatic Arthritis now because outside doctors suck so bad and left me bed ridden for almost 2 years telling me all my pains were nothing …. I see Dr. Orbai best thing that happened to me unfortunately for me my disease destroyed my body but Im feeling better then I was when I first saw her.

I hope you get a doctor with compassion and the desire to actually try to improve if not fix you.

[CaptainSafetyBake91 in reply to Batty1]

Thank you! Glad you found a good doc. Sorry you had to go through all that.

[Charts]

I'm just wondering have you had any brain scans? What triggers your seizures...do you know?

[CaptainSafetyBake91 in reply to Charts]

I have had a brain scan but they could not find anything. The seizures when I was younger were due to a brain bleed.

[mermaid-680]

hi

Glad you have found drs who can help

Physio ideally needs to be intensive rehab inpatient with physio etc who only do FND as others may not be fully trained or experienced in treating it

Sorry too about your misdiagnosis in past

I think those seizures need to be investigated

As it seems the FND is only part of the problem re movement disorder

Being premature can put you more at risk of FND

It’s great you can support and educate others

Is the incontanence FND also ?

Am sure many are relieved to have a FND diagnosis but in the UK it’s become a popular umbrella term when drs don’t know what’s wrong or it’s better to use the label than admit they don’t know

That is dangerous ground indeed

The criteria for diagnosis has also changed

FND in itself can mask organic conditions leaving them undiagnosed

Also if you have FND it can then be harder to get access to health care abd tests for new unrelated symptoms because most drs will try and keep FND patients out of hospitals where possible preferring a Gp to manage

But that too is not good

How many people on here have been diagnosed with an organic problem later and it was not looked at sooner due to the FND ?

My advice would be go to a centre that deals solely with FND a multi disaplinary team

They will do an initial assessment to confirm or to challenge an FND diagnosis regardless of what has been diagnosed before referal

Any issues or red flags to an organic issue rather than FND will be raised

The longer you have had FND the harder it is to treat and the likely hood of success in reversing it becomes less aswell but one must always stay positive but realistic

hope this helps

[CaptainSafetyBake91]

Thank you! The incontinence I am not sure what is causing it I did deal with it when I was younger. But my movements have definitely made it worse.

[Brokendeer]

Hi I would recommend you take note of any particular neck posture triggers when you have a bad attack, it sounds much more serious than just FND movement disorder alone?

Hemiplegia Attack : A friend I knew, used to have Hemiplegia attacks (type of stroke symptoms) every time she looked up at the sky or went on an airplane flight, even sometimes on a bumpy car journey.

Vocal Cord Tightening: Famous singers get larynx and vocal cord hardening/tightening when they get overworked or just with general aging. Based on your birth issues, this may well be tipping the balance as to when you get involuntary movements from intermittent neck cervical spine nerve compressions.

Brain Hydrocephalus: could be a possibility, especially with your seizures and incontinence, it would cause random movement and bladder issues and can be cured with a surgical implant shunt.

Multiple Sclerosis: Usually takes several years to diagnose correctly, completely symptom based and often intermittent attacks rather than steady progressing of terrible symptoms.

Obviously you could have FND movement condition as well with any physical disease or condition, but FND cannot be readily cured, where as medical intervention with physical conditions can be very successful.

Word of warning: another friends parent did yoga regularly and it caused a nerve to be crushed in their neck causing an actual stroke (undetected until too late because not in the brain itself) - be extremely careful with any neck exercises/physio routines and only under medical advisement and using your own common sense.

Anyway, somethings to think about.

Look for the calm in the Storm!

[Boeingbabe]

Eye twitching? Check your calcium and magnesium. Calcium issues can cause seizures +