FND

[TurquoiseTime]

Does anyone have a functional movement disorder?

[Van604]

Yes, I have dystonia, parkinsonism and tremours. Also a strange gait. It wasn't diagnosed as functional until I started having seizures as well though. They thought I had Parkinson's at first, probably because I'm middle-aged.

[TurquoiseTime in reply to Van604]

Ok thanks for sharing, the seizures must be scary!

[Van604 in reply to TurquoiseTime]

You're welcome. Funnily enough, the seizures themselves aren't scary. It just feels like my brain is taking a break and resetting. Im now more careful not to overdo it and overstimulate my brain. I'm a very outgoing and inquisitive person but at my age now (60), I have to accept that my brain can't take it! Also, the world now is so noisy, with bright/blinking lights everywhere. It's having a bad effect on wildlife and I believe on sensitive people too.

[TurquoiseTime in reply to Van604]

I’ve noticed an issue with some lighting. Have you found a solution for lighting in your house?

[Van604 in reply to TurquoiseTime]

I try to avoid the new really bright lights and mostly just use daylight and side lamps.

[christopher_cms]

yes ... i have functional dystonia ... do you have the same thing ?

[TurquoiseTime in reply to christopher_cms]

No I have not been diagnosed with dystonia. I have researched it though wondering if that’s what I have. My diagnosis is functional neurological movement disorder. Dystonia must be difficult to live with. Let’s take one day at a time!

[christopher_cms in reply to TurquoiseTime]

functional dystonia is a very common type of FNMD

[eviedotty in reply to christopher_cms]

what kind of symptoms do you have with functional dystonia if you dont mind me asking.I have been treated for dystonia from a cavernoma in the basal ganglia area of the brain and recently have been told its functional even though it shows up on an MRI scan and it causes bleeds in the brain.Although I have the diagnosis the doctor who gave me it and the Neurologist I am under cannot tell me what my symptoms are so am curious

[christopher_cms in reply to eviedotty]

hi evie ... what are your symptoms ?? ... my functional dystonia affects my entire left leg ... it spasms and locks up/freezes whenever i try and walk ... so basically i can't walk ... it resulted from years of excessive, improper, repetitive exercise ... i was a runner ... it took 20 doctors to finally diagnose me ... so now i just accept it as my new reality ... i have come to the conclusion that it is not something that can be fixed ... it took me years to finally realize and accept that

[eviedotty in reply to christopher_cms]

am still trying to work that one out its the cause of an investigation just now because I was diagnosed on the back of a dystonic storm to the respiratory muscles. My dystonia comes from an acquired brain injury and there fore is structural other symptoms are down to plain old age such as stiff joints if I sit too long I have covid lung and asthma but even though they diagnosed me FND they cant tell me my symptoms and I certainly didnt go to the doctor with symptoms I went for an EEG test to check the dystonic seizures were not epilepsy....with all the blah blah crap they have down graded the FND diagnosis but again cant tell me what they have down graded it to but its the impact on my evidenced health issues that have the potential to become fatal that is the issue for me such as chest wall dystonia does stop you breathing and can give you a potentially fatal heart attack, so my oxygen levels at its worse dropped to 76% and my pulse rate at its worse went to 220 and without the arrest team I would not be talking to you today. The FND has just caused so much chaos in my life...the dystonia has cracked my ribs...put me in HDU twice...been bagged and intubated but not sure if people with FND go this far with their treatment for symptoms thats what am trying to find out and hence the question

[christopher_cms in reply to eviedotty]

wow ... that's a lot to handle ... my dystonia only affects my left leg so my mobility is very limited ... yours sounds less like functional dystonia and more like just dystonia ... make sure you are seeing a movement disorders specialist who specializes in dystonia ... that would be my advice ... best, christopher