FND diagnosis ... DIY

[Lady4]

I am first going to quote Professor Jon Stone off the latest Podcast kindly shared by member: 210272

"If you just give someone a website and say goodbye - that is not enough!".

This bit was emotional to hear, as I experienced that twice.

1st when my son was diagnosed with Chronic Regional Pain Syndrome (something I believe the GP should have picked up on the previous year, after he was having falls getting out of bed following another common teenage condition diagnosis).

2nd nearly six months later after fighting for answers, never even got an appointment this time, just given a copy of letter at a GP appointment (which was apparently sent to me too) from the Paeds Specialist (referring to the same website for FND. We were both left to "educate ourselves", my teenage son read a bit, noted the "software reference" whilst I read the majority of the website and links too.

I was sitting there alone in the dark in bits.

Something needs to change real soon but I thank Professor Jon Stone for creating his website.

[Van604]

I liked the bit where he told doctors not to be "weird" with FND patients. The first neurologist I saw shouted at me when I burst into tears with shock after he somehow managed to get my left hand to stick to my leg (some kind of neurological trick). Then when I touched my forehead (sensory trick) to stop my head tremour, he swore at me, saying I was "buggering up the test". He refused to give me a diagnosis and fobbed me off onto a movement disorders specialist. Since then, I've been both physically and verbally abused by "professionals" ranging from paramedics, ER doctors, nurses and a neuropsychiatrist. Actually, I'd probably be ok with "weird", so long as they just stop abusing me.

[Lady4 in reply to Van604]

Thats awlful, hugs.Yes the medical profession need to get educated in FND for sure as delivering the diagnosis/non diagnosis in the first place can have a knock on effect to the patient.

I think having a mental health clinician in all GP surgery should be mandatory as getting the diagnosis and more often than not, hearing about it for the first time, can be overwhelming and there are things you can do like relaxation techniques etc. There is a chronic illness support at ours, I believe, but that is for other conditions.

The test you described was just taking your mind off the tremor. I tried it on my son when he had leg spasms, I lifted the opposite leg, distracting his attention and they stopped momentarily. There is a video under "hoover syndrome" on neurosymptoms.org that demonstrates that with a patient.

Pretty sure "weird" isn't the vocabulary they should use, more validating the patient and reassuring them this is something that can be overcome. From what I read, more damage is done at the beginning.

I was reading an article yesterday about FND being caused by Covid injections (I actually googled it after listening to an interview re research into Long Covid another user kindly shared) and a story in particular, but a lot was down to fear and anxiety in getting it and the extra exposure to sometimes untrue/not backed up ny actual medical evidence claims on social media.

[Van604 in reply to Lady4]

I would not be surprised if FND turned out to be autoimmune or a post-viral syndrome. I had two severe viruses before my symptoms started.

[Lady4]

Its hard to tell, I think its got so many symptoms, I think I read someone post something about over 200. Its sad but I think many aren't getting diagnosed properly because there aren't the resources to fund but they plough millions into mental health. Yet, if they put some of that money into making correct, thorough diagnosis and timely support, that would make better sense.