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FND Functional Neurological disorder

frank1

By frank1, 1731349573

After some five years of my mysterious condition started, I've been MRI Ultra Scanned and seen by many medical practitioners.  So far no conclusive diagnosis has been give other than Proximal Myopathy . I've researched my symptoms and game up with one or two possible causes but all have been discounted.  My main symptom is difficulty in walking.  It started with severe back pain that stopped and I thought great .  Then some time later whilst working in maintenance at a hospital, someone stopped me in a corridor asking if I was alright. I was walking with difficulty but there was no pain. Years later I'm still doing the same but it's a frequently occurring thing. 

Seen something recently on TV about FND and looked it up online. One line struck me , when on their own whilst walking they can be having problems but when distracted they appear to be fine, words to that effect. I looked up the NHS page and the ink in my pen ran out ticking boxes. At least more boxes than any of the other conditions I've looked up.  I seen my doctor the nextday but as it's neurological they can't do the necessaries.  I'm now awaiting to be seen by an FND specialist.  Trump might be in his third run by the time that happens.  

The condition if it is FND isn't life threatening but it can have a big impact on lifestyle.  Just thought I'd put it up here as I'm still in the dark where it's concerned and I hope no one on here can relate to it, in that no one is suffering with it.  Not looking for sympathy here I get plenty in the hospital. One nurse asked are you okay, I replied weakly yeah I'm fine. She asked are you sure.  I replied even more weakly nooooo. We laughed and both walked on our ways. She more rapidly than me. 

BLA@K said, 1731355969

Thank you for sharing this , this is quite eye opening thank you

indemnity said, 1731356438

It can be difficult to diagnose certain illnesses from symptoms especially if the required test are not done because it is an unlikely illness. It took 28 yrs for me to be diagnosed with Lupus, however, in the meantime I've not got half a dozen other ailments that I was treated for...not sure if that's a positive or not.

Ash Day said, 1731362286

Getting the right diagnosis of course is crucial, and annoyingly with neurological issues this can take time.  Unfortunately, being in the right geographical area to see the right medical practitioners/specialists is a bit of a crap shoot, but I hope you're able to get the right diagnosis and appropriate support as soon as possible.  Keep hammering away until you get what you need.

A dancer / choreographer friend of mine was diagnosed with FND after sustaining a severe neck injury a few years ago.  Initially the condition had a significant impact on her life, and it took some time to relearn how to do some things and adjust.  However, with effort and perseverance she has been able to return to dancing, as long as she's careful and takes frequent rests.  While everyone's personal situation is different, I hope you're able to find a way through that works for you.

frank1 said, 1731365133

Ash Day Thanks for the reply. I'm looking for someone with the condition so we could share our experience of it. There may be a forum somewhere. Not knowing is a pain. I'm glad your friend got her life back somewhat.

frank1 said, 1731422994

indemnity said

It can be difficult to diagnose certain illnesses from symptoms especially if the required test are not done because it is an unlikely illness. It took 28 yrs for me to be diagnosed with Lupus, however, in the meantime I've not got half a dozen other ailments that I was treated for...not sure if that's a positive or not.


It can be a nightmare, but so many things can look like something else.  I need the Grey's Anatomy moment when one of the doctors during one of their illicit sex scene, suddenly stops and exclaims. That's it , it's been staring me the face all along.  Unfortunately British doctors would never behave like that.