Aibu- diagnosis detectives on BBC- must be a set up

[30yearstomorrow]

So just watches diagnosis detectives. Young women,s case...put on a lot of weight, hair loss...now I’m no medic or nurse but said to DH flippantly before they started their doctor’s discussion...polycystic ovaries. 3 specialist and numerous tests later...polycystic overlies...really?? Did it really need a bunch of “detectives” to figure this out when it seemed a likely cause to a laywomen....Aibu to say they have set this program up to be ground breaking when they’re actually dealing with stuff standard GPs should pick up. I’m shocked they made out this was difficult to diagnose.

Or Aibu to not realise just how crap the average GP is at diagnosing this that it took 8 years!!

Yabu

8 years is around the average I believe for pcos.

I have endo, it was 14 years until I was dx despite reporting textbook symptoms to gps approx every 2 months in that time plus numerous a&e visits and other complications also not resulting in referral to gynae which should have happened

Was only discovered and dx due to incomplete/complex mc necessitating surgery and surgeon discovering.

I believe even now over 20 years later it still takes an average of 7-10 years to get a dx.

Even other medics daren’t criticise gps, patients have no chance as they’re at risk of being denied service at all - which can and does happen if you dare to make a formal complaint.

And it’s not just women’s conditions.

Medical misogyny is a major issue right from the point of initial training and the information in medical textbooks.

Women’s bodies differ from men’s yet every conditions “typical” presentation is based on how men present with those conditions which apply to both sexes.

I had a thread a couple years ago on this subject, there’s another running currently on the financial incentives related to LARC

Dd has Eds - classic and VISIBLE symptoms from birth yet she was nearly 12 when she finally started to get close to correct dx

Aforementioned thread in case anyone interested - some shocking stories on here

https://www.mumsnet.com/Talk/amiibeingunreasonable/3402449-Aibu-to-ask-you-to-tell-me-your-experiences-of-being-dismissed-by-medics-as-a-sick-woman-I-promise-to-listen

I read that the average time for a coeliac diagnosis is 16 years!

To anyone who is enjoying this series (and particularly anyone who is beating the doctors to the diagnoses!) I reccomend "Diagnosis" on Netflix.

Am sure that the poor girl with the headache had already been told it was psychological - she came over very distressed and the mum and grandparent were very tied in to her health problems.

It was perhaps educational to see how mental health affects the brain and that 1/4 of people attending neurologists have symptoms caused by mental health but maybe not at the expense of a distressed young woman being on TV.

Next week apparently one of the cases is an ex soldier with seizures. I'm calling it now - he has PTSD and pseudoseizures. This can't have been 'mystifying doctors'. It's a basic exam question - him being an ex-soldier makes it obvious. will be bitter if I am wrong

I thought the same and also wondered why they hadn't screened the other woman for autism. The fact that she reacted with such little emotion was a red flag for me.

First thing I said too, disgusting it took so long for her to get the diagnosis

I haven't watched any episodes but just wanted to say that as with anything on TV, they have to create some drama otherwise it wouldn't pull in the viewers.
So although it's true that some dx take years and there are crap gps as in every profession, viewers should take everything with a pinch of salt!

But all the other cases were much more complex, this one was glaringly obvious to anyone who actually watched the programme.

It took me 8 years of being unwell to get my diagnosis and that was with the best part of 50 blood tests. If they had been opened and charted, it would have showed my white count was incredibly low on every single one and I might have been sent to haematology sooner

Same with my recent diagnosis - thyroid problems run in my family (every female has them) and apparently my T4 has been dropping for years but it had to get really bad and now I've got hashimotos. Still can't get a referral to an endocrinologist though

It’s disappointing to hear how people continue to suffer from poor care but it made me think how hard it must be to be a GP. You have such a short window of time to make an assessment of a person and even if they end up repeatedly needing appointments, is 10 mins ever enough time to dig deep?

I too said PCOS to dh within a minute of her case being discussed. I used it as case in point regarding women’s health issues being discussed.

No woman with absolutely classic symptoms of pcos should be fobbed off for so long their hair loss is so severe they have the wear a fucking wig. It’s an utter disgrace. I hope this show is shining the spotlight on some really shitty doctors.

The formula seems to be: patient presents with long clinical history and symptoms strongly suggestive of X.

Got a TV programme to make so Y and Z have to be seen to be investigated and ruled out.

Final few minutes, patient is given diagnosis of X.

I wouldn't have got the cutaneous sarcoidosis or the vagal nerve damage but the rest have not been terrifically mysterious

I feel like the EDS was not diagnosed because the main presentation was with weight loss and it went down the route of gastro and no-one considered a systemic disorder but she did have obvious symptoms and signs of anyone was looking.

I know I am biased but they need a psychiatrist. A lot of these poor people need mental health help not just the functional blindness girl. The guy with the very bad eczema I thought was depressed and that might partly explain why he hadn't got on top of the eczema. You do need a lot of motivation and ideally help to apply the creams etc and he looked like he had no support at all and was really isolated. I think it was someone taking an interest as much the right creams.

I'm not saying they don't have real disorders or 'it's all in your head' but it's missing a trick to destigmatise and show that your mental and physical health are intertwined.

And if the soldier next week does have PTSD and functional seizures then I will definitely rest my case

@JacobReesMogadishu - I would be cautious with yoga and EDS.

I have had a lot of physio over the last 10 years (I also have fibro and now a suspected inflammatory arthritis) and they have all warned against yoga as it can increase flexibility which EDS patients already have in abundance. My current physio has suggested pilates instead to improve strength so I will give that a go when I'm out of my current suspected arthritis flare. She's been very good so far so I'm hoping she's right about pilates

I have found physio helpful and previously found hydrotherapy helpful. Hopefully something like that might help your DD and they can advise on suitable exercise

I find both yoga and Pilates helpful for my eds, and I also have inflammatory arthritis.

My rheumatology consultants and all of the physios I've seen basically encourage me to do whatever helps with the caveat that I control the range of movement. One consultant (a leading expert in EDS) said that he encourages his patients to maintain their range of motion and flexibility but also to build strength because it's the stiffening of joints that causes the pain.

I think it's a case of doing what works for you rather than there being rules.

The vagal nerve damage was so obvious the gastroenterologist wouldn't let them consider any other diagnosis. There was literally nothing else it could be, even to pad out a TV programme.

Spoiler alert: I've actually seen one of the doctors on the programme (he is amazing) and if they are all like him then they are very mind/body aware.

But yes, not having a psychiatrist or a psychologist is a massive gap in their team. I think the look is to be all mega nerdy and 'it's so hard to find this rare diagnosis' but actually mostly it's not and these are people who have now suffered a long time and have psychological problems as a result.

I know a whole community of people who got very excited when hyperparathyroidism got a mention in this series! It’s one of those things that’s more common in women and routinely gets dismissed as peri-menopausal symptoms or mis-diagnosed as fibro or something else.

Anyone know how long ago the episodes were filmed? I thought it sounded a bit sad that the update at the end about the woman with PCOS just said she was taking the new medication but didn't say she'd managed to lose any weight or that her hair was growing back. You do wonder if that means the meds aren't actually doing anything.

In fact, hasn't that been the case for quite a lot of them. No improvement has been suggested in the bit at the end. Or am I remembering wrong?

@JacobReesMogadishu for your DD, have a look at Jeannie Di Bon. She's a dancer and physiotherapist who has EDS and her programme is really good for us zebras. She has a YouTube channel and it's great. I missed pilates and dance a lot so it's nice to be able to exercise safely again.

I was diagnosed with PCOS aged 31. Looking back as a teen I had all the classic symptoms but when my mum took me to the Drs because my periods were all over the place at the age of 16 their response was to put me on the Pill - no investigations, just handed a pack of pills and told to crack on.

You only have to look at the recent news headlines re the vaginal mesh implants and medication given to women that caused birth defects to realise that most Drs are very quick to dismiss “women’s issues”.

@mrsmcwrinkly

Anyone know how long ago the episodes were filmed? I thought it sounded a bit sad that the update at the end about the woman with PCOS just said she was taking the new medication but didn't say she'd managed to lose any weight or that her hair was growing back. You do wonder if that means the meds aren't actually doing anything.

I think it must have been fairly recently as they hinted that the other girl was still waiting to see a psychologist- presumably due to Covid restrictions.

I should add that during my PCOS investigations (as we were TTC) I had an ultrasound and the technician quite happily informed me that she could see no signs of any cysts.

At my next appointment with a fertility specialist she took one look at the print outs from the same scan and said my ovaries were “Classic PCOS”.

My friend was given one of these, she's a GP and she uses it all the time at work.

That said, sometimes I think a good old google search is as informative and I no longer think what a doctor says is the only answer!