FND

This is a hard one to write.

I have a problem with my breathing, having had scan after scan and test after test today I realised that it is more than likely a symptom of my FND.

This time last year I had never heard of FND, but now after my experience of loosing the use of my arm leg and speech for approx 10 days I have read quite a bit about it.

FND ( Functional Neurological Disorder) is still an unknown condition, sadly many GP’s do not have the knowledge or training to fully appreciate the disorder.

If I go to the Dr say with constant headaches, the Dr eventually sends me for an MRI, the MRI comes back normal, the Dr then concludes it is migraine. Does the Dr tell you that because all the tests were normal you are imagining it? The symptoms are in your head? One would hope not, but tragically many patients who have FND are still told that .

FND is slowly being more recognized, historically thought to be bought on by past trauma or recent trauma the symptoms are vast, worse case scenario, a sufferer looses the use of his arms legs or speech, tremors occur, tics, short temper , sleep disturbances, abnormal breathing, loss of muscle coordination, attacks of abnormal movement, loss of vision … the list goes on.

There are some illness’s that it’s accepted, probably even expected a patient will suffer from depression, for example a patient with multiple sclerosis may fear the future the uncertainty of not knowing how the illness will affect them as time goes by, but with FND there is a reluctance to talk about the depression or anxiety it can bring, along with the very real symptoms.

A person may be worried people will think it’s imagined, that they choose to be experiencing these symptoms that if they would just get over it they would be fine. The stigma of FND is akin to the stigma of mental health issues.

FND is real. It is a neurological disorder that no one chooses to have .

It is not “in our heads”

It is not “ in our ability to get over it”

It affects people’s lives daily.

 

Knowing I have FND, has given me to some extent comfort, when my face twitches due to my breathing issues I know this is not “my fault”, putting a label on something can sometimes be a positive.

FND research and dr’s in general being given more specialized training is progressing, but there is a long way to go.

I am afraid of FND as it is so unknown, Every time I feel weakness in my arms and legs I ask myself is this FND and am I going to end up back in hospital unable to speak or move.

 

I would love your thoughts if you suffer from FND.

Lots of love

sara

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