Getting a past FND/ conversion disorder diagnosis revised in light of new (correct) diagnosis.

[stripybutterfly]

Has anyone here had any luck with getting a functional/ conversion disorder revised in light of a newer diagnosis of a physical illness that would explain past symptoms?

Years ago I was diagnosed with ‘conversion disorder’ as I was having blackouts/ seizures and episode of balance issues. I was diagnosed literally within an hour of being in hospital. I’d recently been very ill with a fever and had been fainting a lot.

I’ve now been diagnosed with Orthostatic Hypotension which would explain these episodes. I get fainting episodes and convulsions afterwards because my brain is starved of oxygen. And low blood pressure causes temporary gait issues.

Having this ‘conversion disorder’ diagnosis caused me a long delay (like 6 years!!) in getting the correct diagnosis, because when I went to doctors about worsening symptoms (which I now know is Orthostatic Hypotension) it was blamed on the FN/ Conversion disorder.

A neurologist I’m seeing has now classed these 'seizure' episodes as ‘faints causing convulsions’.

But I’m finding that doctors get very defensive when I bring up the issue of past misdiagnosis.

Also, and this was really upsetting. I had a recent neuro exam, and the neurologist put a label of ‘functional’ on some co-ordination difficulties I have, but that dates back to a childhood brain injury. I was so upset and angry with this and I’ve asked for this label to be removed.

I’m finding that neurologists are so quick to label things as ‘functional’ and I know that having the diagnosis on my records has been causing issues. With doctors lumping every symptom on that.

So has anyone had any luck with getting a past diagnosis revised. I have asked why ‘syncope’ wasn’t considered as a reasons for these blackouts, because syncope is a common reason for non-epileptic attacks.

Thanks.

[210272]

Hi stripybutterfly ,Where are you located? I'm asking because different health services have different ways of recording misdiagnoses and ensuring that they don't keep repeating on you. Doctors do tend to defend each other when misdiagnoses are made which isn't always helpful but you could just ask your neuro not to mention the F word again because you find it distressing due to your previous experiences with doctors. Another option would be to give feedback on the neurosymptoms dot org site and ask what you should do to have the misdiagnosis noted and overruled officially.

[eviedotty in reply to 210272]

Is there actually any help to get this over turned on neurosymptom site because I am now in the third stage of complaints and due to covid dont expect to hear anything for at least a year or more. This FND is on my record and has caused catastrophic impact on my life in that I have lived with dystonia for 20 years then on the back of a doctor watching a dystonic flare up on video at a EEG test and nothing more I was told FND....first stage when I let the neurologist know just how ridiculously stupid this is making him look he responded by saying the FND needs to be downgraded...second stage did not acknowledge 10 years plus attending the clinic nor did the acknowledge that I have 3 cavernomas in my brain all of which have bled and bring there own challenges including a stroke that was assessed as requiring brain surgery was acknowledged as in they actually said you have no diagnosable neurological disorders and there fore have FND and now am at the Ombudsman.It has wiped out any idea of getting back to an exercise class or swimming once the covid is under control and we can go it has just totally trashed a life that took me a long time to rebuild and it gets me bullied and intimidated at the ED when my respiratory muscles go down as am now seem as a closet drug user in denial /drug chaser and the laugh of that is I dont need to go further than the kitchen cupboard were I would find enough drugs to put an end to everything full stop.

my GP services is amazing as is the out of hours service for keeping me back from hospital as they work with the rescue plan and just now that includes, asthma, dystonia. covid lung and injuries which have happened as a result of freak spasms from the dystonia now things are more settled but if I see a different GP in the practice then there is a revisit to the FND thing and the best GP services have been able to do is to hide the FND as a previous illness. Its really hard going what this has done to my life and what makes it worse is no doctor from the Consultant who diagnosed me , my own Neurologist down to GP services can tell me what are the symptoms that give me the FND diagnosis and the reason they give for that is the best.....your health issues are so complex we cant say for sure which of your symptoms belong to FND BUT I have FND...how can you have a illness of any kind without known or complained about symptoms that require assessment??????

there has been a number of complaints through the ED which ended up with a meeting between the managers of both neurology and ED and the outcome is that my care plan which has been in place for 5 years is now red coded as I will die if they dont use it...I have been in HDU, intubated numerous times and had the arrest team attend me numerous time and all of this is now FND...

[210272 in reply to eviedotty]

It's a hard diagnosis to get off your records but I'd tell your doctors that you have had years of psychological trauma as a result of this diagnosis and that your mental and physical health have not benefited from this. If they can't identify the 'positive signs' that need to be present to make the diagnosis now (even if one guy thought he had, way back), you may be able to say that you're now in recovery/remission from FND but still need medical support for other issues.

[eviedotty]

In the nicest possible way you are now a member of and ever growing club and I can only send you love and prayers that you get this resolved I am in the same situation but had the illness for 20 plus years which has for me potentially life threatening complications and now that has been over turned to FND...read my story further down this thread ...Good luck and do stay strong....xx