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Functional Neurological Disorder - FND Hope
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Help!!

Hello wondering if you can help me. I have a friend who has fnd and suffers from stroke like symptoms when having a bad episode. She had one last week and the first aider sent her home should she not have been checked for stroke rather then assume it was an fnd episode.

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I suppose that depends whether your friend is at high risk for stroke (high BP, overweight, high cholesterol etc.) and also how often the FND attacks present like this. If this is the norm FND-wise and the stroke risk is low, going off to hospital every time for CAT and ECG would be an emotional drain on them, as well as a financial drain on the NHS. If not, then an overall health check at the GP should sort out whether anything can be done to assess and lessen the risk of stroke occuring.

When I have an attack I lose mobility in my legs. I also have a brain aneurysm so have been told to go to A&E whenever 'unusual neuro symptoms' occur. For most people a sudden loss of power in the legs would qualify. But losing power in my legs is not, for me, an unusual symptom - it is just the FND flaring up. Similarly I suffer from migraine. One sign of an aneurysm rupture is a sudden, splitting headache - but I can't go on for an MRI every time I get a migraine starting.

You know what is 'normal for you' in these circumstances. Of course there is an element of risk to it -we aren't medically trained. But where FND is concerned, most of us appear to know a far sight more than the medics to whose caseloads we belong. If they have had their stroke risk checked out and are no more at risk than average, I would trust your friend's judgement - it is far more likely to be 'just' the FND.

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Has she been checked for a stroke before if so did they tell that she hasn’t had a stroke and will not have a stroke if so she do not have to be checked for stroke but if not yes she should be checked. My GP told me any numbness should be checked out but the hospitals just treat you as if you are putting it all on hope this helps and do feel free to contact me if you need any more information/ Support tell your friend to join the Fnd group on face book if she hasn’t already.

Well I will leave it there for now take care Debbie x

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My heart goes out to your friend. This was one of the symptoms that I would experience. After being diagnosed With FND/ FMD I continued searching for answers as I felt in my heart somthing was being overlooked or missed.

I am thankful I did as I stepped out of the conventional medical and did more testing and then would realize I have tick borne illness/ Lyme disease and co- infections. I had been tested at four hospitals prior to this, having been told I did not have Lyme Disease that the blood test was negative.

The symptoms for Tick Borne Illnesses resemble very much FND. The stroke like symptom I experienced I would learn later was Bells Palsy. I feel in my heart many of us have perhaps been misdiagnosed. Or perhaps another way of looking at it is there are not able to acknowledge " chronic lyme" in the conventional medical....they can give a label...FND...which what does that mean???? I wondered this as after being diagnosed was given a book and a website and sent home with an appt for 6 months later. Unable to walk, talk or function correctly after being a very active and healthy person.

There is hope....if we follow our heart...that is when answers can be found. That is how I was fortunate enough to find mine and now have a better understanding as well as regaining health. Ask questions, research, and advocate for it is our body and we know it best. My heart goes out to all that are suffering.

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I would of said yes, Sadly as soon as they know we have FND They assume everything is down to that, that is why we have to push get ourselves checked out for other things just to be on the safe side, I would just keep an eye on your friend and if she gets these symptoms again then take her back again and keep going until shes happy that shes been treated fairly and shes happy with the outcome.. Good luck xx

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