Misdiagnosis

[GardenPlant]

Just wondering if anyone here has received a misdiagnosis of FND?

[Gaslitbymedicine]

Personally I believe all FND diagnoses are a form of medical gaslighting. A way to brush a patient off when the answer doesn’t come easy. Don’t give up the search for an answer if you believe that they are wrong.

[210272]

Many people with rare conditions have, for sure.

[CROakland]

I don't know how to be sure that this is a correct or incorrect diagnosis for me. I'm trying to embrace it and see how it fits. It was suggested to me many years ago but I felt emotionally resistant to the idea. I have decided I will just explore therapy targeted at FND because I am guessing I will get something out of it even if the diagnosis is wrong. But I'm at the beginning of this, so we'll see...

[Autoimmunie in reply to CROakland]

that’s a good approach- if it works that’s amazing. If it doesn’t at least you have proof you submitted yourself to the “rule out game” and it has been ruled out so they need to look for more answers. But as a general rule - if you are not responding to psych meds, therapy and are getting worse dont wait for years to look for another opinion. Therapy is good for you regardless of whether you have FND or not, but if you have an autoimmune disease or slow growing tumor- you want to get that treated also- because these things are not wine - they don’t get better with age.

[Wedny1]

My neurologist had me down as having ataxia for years and years and I was getting treated for that however after a fall in snow another neurologist then said no I had FND nobody has seen me since then and a physio said I have to live day by day with the symptoms!!! So that was 5 years ago I would agree gaslighting!!!

[210272 in reply to Wedny1]

What was the basis for the FND dx, if you don't mind me asking? Neurologists are meant to give people a rationale for their diagnoses. Physio is thought to be helpful for p/w FND so 'learn to live with it' (or variations on that theme) isn't OK.

[Wedny1]

I didn't even get that 😕 20 minutes in a room with different neurologist who dismissed me, my own gp had to tell me what they wrote and they said and then showed me different websites that I could look at, the physio seen me twice then sent me sheets out to do at home then discharged me. The physio said all my symptoms are variations of ataxia!!!

[Autoimmunie in reply to Wedny1]

You need to get your GP to find you another neurologist. Ataxia doesn’t just happen get GP to order an MRI. You need to get to the bottom of it. If a neuro couldn’t even discuss the Dx with you - clearly speaks to the fact he has no idea what you have. There is a paper by Dr Stone himself where he emphasized that the diagnosis shouldn’t be overused just because presentation is atypical… and success rate with FND rehab is a measly 30%… what does that tell you about the diagnostic skills. We have the right to see the evidence for their diagnostic basis.

[Autoimmunie]

absolutely. I have autoimmune encephalitis and about 7 other autoimmune issues that developed after initial stroke like episode. If I believed the two high powered neurologists I would probably be dead by now. The diagnosis of FND is handed out when they believe your symptoms don’t fit “classical” organic illness… funny part when your brain is going through injury and regeneration process - any smart enough neuro will tell you that after injury and through the snail pace of healing process of synaptic formation and pruning - lots of symptoms that don’t fit clinical expectations might emerge because of the chemical imbalance and disrupted communication between neurons until pathways are formed.

I am not denying that there are people that truly have “software” problem - and if therapy helps that’s great - but if you find yourself declining- keep pushing for answers till you find someone who is not going to give up because you are too medically complex. 🤗🤗🤗

[Jillymo in reply to Autoimmunie]

Like you I have a complicated autoimmune medical history which has taken years to diagnose yet 20mins with an imbacile of a nero and i'm given the FND label ! I no more have FND than a boil on my bum.

I now have a case open with pals but doubt if it will get me anywhere - I wont give up and intend to take this ignorant nuro to the cleaners. Like the person above said the condition wasn't even discussed with me but he made sure it was written in the letter he wrote to my gp. 😡

We mustn't give up this sort of labeling could cause complicated patients like use a great deal of harm if not our life's 😘

[Autoimmunie in reply to Jillymo]

FND is given out when neuros own insecurities get the best of him. Easier to blame the patient than to try and find answers. I made it a point to educate tge neuro with letters that have irrefutable evidence on various testing for the issues brushed off to FND. Now need to see neurosurgeon to make sure my “FND” doesn’t result in a ruptured aneurysm in my head. At least in the US we get our medical records and can argue against egregious mistakes… and good for you for taking him/ her on. This will never change if we allow ignorant doctors to go on.

Truly makes my blood boil sometimes when I read everyone’s stories.

[angel-7 in reply to Jillymo]

Awesome comment. Thank you.

[Hidden]

Hello Garden,

I was misdiagnosied with it. I have PPMS due to the misdiagnosis and it has caused permanent damage and loss of things i can do in life.

If you have any questions feel free tp reach out.

Best,

Matt