UK health/patient discussion forum

[StvGll]

Can anyone give me the name of a UK forum where I can discuss health issues, I've tried google, but must be using wrong search words.

My wife is in a very serious way, rapidly deteriorating, and totally not happy with diagnosis (and 2nd. opinion from same people).

I'm not looking for medical advice, just want to throw symptoms out there in the desperate hope that someone's had similar issues.

The only one I know of is 'Stuff That Works' but I've no idea if it's any good

Healthunlocked is quite good, there are separate boards for different conditions, so you need to search for an appropriate one. No medical advice given, just other people’s experiences: healthunlocked.com/

Has she been diagnosed with a condition, have you tried that forum, it sounds very difficult, some people here may be able to help.

Can The patients Association help you both

Thanks for all the replies.

She has Functional Neurological Disorder (FND), but it feels like it's a catch-all term for when they don't know why somethings happening, and it's an endless line of "everyone's different" when you ask any questions, extremely frustrating, wife's condition now is that she can't walk (can't feel her legs), can't feed herself, keeps shaking, can't talk, is incontanent, and now losing the strength in her arms, 3 months ago she was a fit 53 year old carer who woke up to find she couldn't walk, it's all been downhill from there, and the really frustrating thing is, they say it's probably caused by stress, this despite her life being easily in the best place it's been for, well, forever, just back from holiday, just bought new car, finally put previous health issues long behind her, started her own business and got that to exactly where she wanted it, both loving the jobs we do, and we finally started saving money.

Not sure what The Patients Association is, I'll look it up.

I think I looked at healthunlocked earlier, and when using their search function I got no results for FND or Functional Neurological Disorder, but I'll try again.

I've joined the 'Stuff that works' website (OMG, literally was 100 questions), looks really interesting and already chatting with a few people.

Thanks everyone.

Is she on Instagram? My cousin in law has FND and seems to have found a supportive community there.

There is a support group called FND HOPE Uk

My mum has FND but hers is presenting as pseudo-dementia at the moment . It is an absolute nightmare trying to find any sort of support - there are groups on Facebook (search FND, psychogenic seizures/dystonia, NEAD - all sort of cover the same thing, kind of) . It is beginning to be talked about more but even through uni (I’m a student in healthcare course) they still refer to ‘hysterical conversion’ …

Mum sees a neuropsychologist, neuropsychiatrist, rehab psychiatrist, general adult psychiatrist, OT, and GP and is known to mental health team too - it’s a very, very slow process to get any help at all though and very frustrating .

Family say same as you re catch all term . It’s very frustrating all round - mum needs 24/7 care which is mentally exhausting .

Sorry to hear she’s so unwell. I’m a belieber that a huge % of people with FND have a physical condition which didn’t show up on basic testing so it’s called functional (aka psychological ) . Neurologists know if they use the old term psychosomatic or conversion it will make patients annoyed so they go with the ‘brain and body aren’t communicating’ or the software vs hardware analogy.

If there could be a psychological link she could read Dr Sarno's books but she needs to choose to read them - making her read them probably won't work.
Being a carer can be so demanding. Wear you down.