Definition of a rare disease in regards to FND

[Pault1]

raredisease.org.uk/what-is-...

FND might be common in a neurological setting but that is not how you define if a condition is common or if it is rare it is based on a ratio of the population that is affected per year e.g

50 : 100,000

What is the occurrence of FND as a ratio per year?

why are medical professionals deviating from classifications set out by government?

If they don’t have accurate information about occurrence of FND why not?

They compare the occurrence of FND to the occurrence of MS or Parkinson’s “ as common as MS or Parkinson’s”

rarediseases.org/rare-disea...

MS estimated incidence of between 8 and 11 new cases diagnosed each year in England per 100,000 population and Parkinson’s incidence rate of 33.4 per 100,000 person per year both classified as rare.

[Van604]

I entirely agree with you - it doesn't make sense. I think it's because there is no clear definition of FND or even consensus on its name - my previous doctor insists on calling it "conversion disorder". He said it's 1 in 100,000. He's a neuropsychiatrist. The neurologists seem to disagree - they say it's as common as MS/Parkinson's. But that appears to be mostly anecdotal. There have been very few studies on prevalence so who can really say? That seems to be the whole story with FND - it's hopelessly underfunded and under-researched. I think the reason why Jon Stone etc are saying it's as common as other better-known and better-funded neurological conditions is because they are trying to put it on the same level, in order to get better funding. I'm all for that. Maybe with some good quality research they can finally start to get a handle on what it really is, instead of fobbing patients off with a load of psycho-babble!

[Di01]

Im new to fnd but i've Started getting tremors first they was inner shaking now its full on body shaking scaring me how can i stop these

[Pault1 in reply to Di01]

Reducing stressGetting plenty of rest

Moderate exercise

Relaxation techniques

fndaction.org.uk/stress-man...

neurosymptoms.org/en_GB/sym...

fndhope.org/living-fnd/heal...

fndhope.org/living-fnd/heal...

[Di01 in reply to Pault1]

Hi Paul easy said than done redueing stress its hard because i think menopause is triggering it off hormone imbalance then this chemial thing in brain sending wrong signals like even relaxing i still feel tention vicious circle its horrible tho when u dont feel that ur body cant hold u up then dizzy spells headache and muscle pain weakness and either inner shaking or tremors jerking in sleep that wakes me and oh all the odd feels in my head swear down trying to not stress while my body just feels useless and when u think ur brain is slowly dying memory problems that send u crazy because ur forgetting important things and the nervous r shocked more so heart pounding fast headache that make me cry its just so draining ive tried almost everything change of diet two baths a day to relax and colouring music but still its like its there none stop been on different meds that have just made me sleep all day and i still feel odd on them basically wasting days in bed and not living rather suffer being up feeling ivs seen some of the day tbh i was neva one for bed rest b4 i got ill hard coming from avin an active life to having a isolating one now i know im hard on myself to i dont want to expect wots going on i wonder if im eva going to just have one day of rest from the above sysmptoms but thanks for sharing the info i noticed there aint much help for this condition is one u have to live in hope with!

[210272]

Hi Pault1,As far as I can tell, FND is conceptualised as common but 'conversion disorder' is conceptualised as rare. Yet Prof Staab used to (and maybe still does) diagnose 3 cases of 'conversion disorder' per day. In a process which he described as 'fun' (ew). However the Perez et al 'blame the patients' paper on 'functional neurological(conversion) disorder' doesn't seem to offer a distinction between rare or common presentations. And, since it is not a 'diagnosis of exclusion' (and is made differently from clinic to clinic), it's unlikely that any useful data can be gathered about this, therefore making it much harder for the bean counters to allocate resources effectively.

[Pault1]

Royal college of physicians

Estimates of incidence are conservatively 12 per 100,000 per year.

rcpjournals.org/content/cli...

[Di01]

Chronic pain in area of top of legs to knees shoulders upper arm to.elbow and now my thumb backache too these all part of fnd ??..fnd just feels like the drs dont kno what u have and no real clue so instead of further testing they give u this silly lable sick of feeling like ive been brushed off with only having a brain scan that come back my brain looks normal now frustrated with the pain ive had no help off anyone all the offered me was talking to mind as tho this will take away the issues r these people for real