FND Diagnosis

So on top of my autism diagnosis that I received a back in September, I am now told that I have FND........FFS!

Never heard of it before,so been trying to research online over past couple of days.

Whilst I do have some symptoms (fatigue, double vision and tinnitus), I am not convenced of teh diagnosis.
My symptoms can be related to a whole load of other things....anxiety, medication, etc.

It seems that a large number of people with FND experience considerable mobility challenges - something that I fortuneately do not have myself.

The diagnosis experience wasn't helped as I had a meltdown when we arrived at the hospital only to be told that they didn't have a record of my appointment.
On presenting the appointment letter, they then sadi that it had been cancelled, but could not tell why.
They then admitted that they had failed to send a letter advising of the cancellation.

Fortunately there was a neurologist who was able to see me after a short wait (30 mins), but I was not presenting in the best way as I was still coming down (or rather medicinally sedated) from the meltdown. Therefore I was not cognizent enough to ask important questions and challenge the diagnosis.

The outcome was being told to go outside and drink my morning coffee and go for a walk each day.
The latter I do anyway, but they can sod off if they expect me to go outside first thing in the morning at this time of year.
I now have to wait 6 months for the next appointment!

Has anyone else had any experience of FND?  

Parents
  • You mean Functional Neurological Disorder. I have been diagnosed with that.  Some think it could be common with HEDS which I have been referred for an assessment. FND to me is horrible, tension, spasms, tic type stuff. Very uncomfortable.  EDS is more common with Autism. I have Hypermobility. 

  • Yes, Functional Neurological Disorder is what I have been diagnosed as having, but I am not sure that I agree with that.

    I have joined a couple of FND groups on Facebook and the vast majority of posts related to much more disabling symptoms which I do not have myself. I'm concerned that the neurologist  has been hasty in providing the FND diagnosis. I was supposed to be seeing a different neurologist who is more aware of my circumstances (had the hospital appointment bookings team not made such a *** up). Whilst I was grateful that I at least got seen by a neurologist, she had no prior knowledge or involvement with me.

    We have recieved a written apology from PALS regarding the mess up that the hospital made and are now waiting to get contact details for the neurologist's secretary so that I can send over a load of questions and challenge the diagnosis. For starters, there was no discusion about the many mediactions that I am on and how they could be causing or at least contributing to the symproms, 

  • Yes carry on with the self discovery. I have had medications in the past that I thought could have brought on tension and spasms. I am still not sure if it could be psychosomatic or both combining. Is mine serious or not if it makes me not want to live which is true.  A couple of years ago I started Sertraline and afterwards restless leg syndrome came on. I have also been told by others on a EDS forum that Hypermobility increases it. So what’s it all about folks. Perhaps the physical can combine with the mind. Although I would not assume that in your case. I hope all goes well for you. 

Reply
  • Yes carry on with the self discovery. I have had medications in the past that I thought could have brought on tension and spasms. I am still not sure if it could be psychosomatic or both combining. Is mine serious or not if it makes me not want to live which is true.  A couple of years ago I started Sertraline and afterwards restless leg syndrome came on. I have also been told by others on a EDS forum that Hypermobility increases it. So what’s it all about folks. Perhaps the physical can combine with the mind. Although I would not assume that in your case. I hope all goes well for you. 

Children
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