FND petition

[Numina]

Petition to make GP awareness of FND mandatory.

Please sign and share

chng.it/kFm4twWR8S

[210272]

Numina, I'm confused so hope you can help me to understand. If your seizures were the result of side effects from pain medication, why and how were you diagnosed with FND/Conversion Disorder (now known as a core psychiatric condition)? Did your prescribing doctor report this side-effect?

[Numina in reply to 210272]

Hi ya.

Do you mean the description in the petition? It's not my petition, lol. I'm just sharing it.

Please do make sure you sign it and share with people. Would be lovely for FND patients to be treated with decency ✌🏻

[210272 in reply to Numina]

Thanks for the explanation All patients should be treated with decency but, from the description, the person who wrote the info in the petition may not have FND/Conversion Disorder and might want to question their diagnosis. It is already being over and mis diagnosed a lot, particularly in the UK. And since quite a large percentage of the diagnosis can be made on the basis of the referral note, I think GPs do already know about it.

It might be better if they knew more about the conditions/symptoms people have that get misdiagnosed as FND/Conversion Disorder such as pernicious anaemia, many rare conditions and vestibular migraine. Plus, of course, symptoms that arise from side effects of medications which could contra-indicate a FND/CD diagnosis.

[Numina in reply to 210272]

Totally agree.

My neurologist diagnosed my blatant PLMD (from a video my partner filmed) as NEAD after ordering an EEG, which the results were normal. He should know a polysomnography is used for diagnosis and any decent nuero would also know the difference between PLMD and NEAD.

He has now discharged me with FND/NEAD.

I've sent him a letter suggesting I have dopamine deficiency (possible cause of PLMD) and that it could also account for the debilitating stiffness and rigidity in my legs, I've asked if I could be trialled with dopamine medication, just to see what happens. No doubt he is not happy with my questioning his expertise and I am still yet to hear from him, several weeks later.

😬

[210272 in reply to Numina]

I don't know what PLMD or NEAD are or what polysomnography results would indicate one from the other. Are you saying you think you have been misdiagnosed with FND too?

[Numina in reply to 210272]

Lol, yeah, there's lots of acronyms there 😂

PLMD is Periodic leg movement disorder. It's when your legs flex and kick every 20 seconds or so in your sleep. Most people only know they have it when their partner tells them.

NEAD is non-epileptic-attack-disorder. So basically, symptoms of epilepsy without any EEG findings.

Polysomnography is a test you have in your sleep in a hospital (with EEG, heart beat, blood pressure, EMG - wires ALL OVER your body! And a camera filming you)

In light of the neurologist failing to diagnose PLMD and throwing any sort of epilepsy in there, Yes, I really do think I have been misdiagnosed. Especially when the cause of PLMD can be dopamine deficiency and he has ignored my leg stiffness and motor difficulties as also being possibly caused by dopamine deficiency. I really thought a neurologist would know this stuff.

[210272 in reply to Numina]

Thanks for the explanations but please could you explain how the polysomnography results are used when it comes to the FND/Conversion Disorder diagnosis?

Dopamine is key with Parkinson's as far as I can tell and I think it may be involved with many other motion/movement conditions too. I hope the neuro follows through on that, at least.

[Numina in reply to 210272]

A polysomnography would not diagnose FND at all. It would diagnose a sleep disorder.

I really don't think my neuro will investigate dopamine deficiency at all, unless maybe I can convince my GP (i have a phone appointment on Monday) that it might be a possibility. Maybe she would contact the neuro or ask around for advice. 🤷🏻‍♂️

[210272 in reply to Numina]

Again, thanks for the explanations and I hope your GP can help. Having read the petition information again I think it could harm, rather than help since it comes across as a rant/vent and won't win hearts and minds amongst medics. A friend in PR read it and commented that the poor grammar won't help either. What do the admins here think about it, do you know?