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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

101 replies

30yearstomorrow · 14/09/2020 22:46

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.

OP posts:
Toontown · 15/09/2020 06:47

Ehlos Dandos Syndrome is much harder to detect than PCOS. I only have met 2 people with EDS has lots with PCOS working in healthcare.

JacobReesMogadishu · 15/09/2020 06:49

And I’ve had more help and sensible suggestions and possible diagnosis for Dd from MN than I have from the GPs. Over the years I’ve started numerous “what do you think it might be” threads. And I think it was someone ages ago Here who said maybe EDS, maybe POTS.

I see similar threads here and someone will always wade in saying shouldnt ask for advice in here, go see a dr, etc. I’d place my bets on MN getting it right to be honest.

Twilightstarbright · 15/09/2020 06:58

At the start of my diagnosis journey for EDS, POTS, fibro and a couple of other things (@JacobReesMogadishu are you my Mum??) I would have been so thrilled to have a team.of doctors sit there and discuss me like that as opposed to the constant "you're anxious/depressed" line on repeat.

I was really pleased to see EDS on BBC though, so many people haven't heard of it or can't see why being bendy is a big deal.

EDSGFC · 15/09/2020 07:19

I was really pleased to see EDS on BBC though, so many people haven't heard of it or can't see why being bendy is a big deal.

I've had drs say the same to me - they want to try living with it.

Xiaoxiong · 15/09/2020 07:23

I just listened to a podcast about a website called CrowdMed which is meant to help people use the "wisdom of crowds" to get a second opinion from lots of doctors - not to get a diagnosis but to get ideas to take to your own doctor to suggest an investigation. It sounds like the kind of thing the people on the programme should have tried!

Ihaventgottimeforthis · 15/09/2020 07:29

I'm hoping there's a lot of clever editing going on behind the scenes to bump up the drama levels, whilst the patient in question DOES get the support they need.
They do quite rightly also need to rule out more serious conditions as well.
But hopefully this programme IS awareness raising of not-that-uncommon conditions that aren't diagnosed, are untreated, become chronic, because of healthcare system failings.

RobertSmithsWig · 15/09/2020 07:32

I was going to start a thread on this subject! Within seconds I said PCOs for that young woman, it was frankly bleedin obvious. GP and consultant diagnostics should be computer lead to take human error and, frankly, doctor apathy, out of the equation. Bottom line is they don't care enough to put the effort in for their patients. I've been a victim of GP apathy - fortunately it didn't kill me, but it did kill my sister-in-law who died from undiagnosed hyperparathyroidism aged 48. She was dismissed by her GP as depressed and overweight and a simple blood test could have saved her life.

purpleme12 · 15/09/2020 07:37

Why are so many doctors so shit?! I don't get it

EpidermolysisBullosa · 15/09/2020 09:02

@EDSGFC

I was really pleased to see EDS on BBC though, so many people haven't heard of it or can't see why being bendy is a big deal.

I've had drs say the same to me - they want to try living with it.

That's so true! 'oh it's just a bit of flexibility, other people do yoga to try and be like you - try yoga yourself'.

Fairly sure those yoga enthusiasts don't also want the stretchy skin, hernias, poor wound healing, dislocations/subluxations, bowel and bladder dysfunction, raynauds and low blood pressure/fainting/POTs.

The only good thing about EDS is my velvety skin - I used to sell skin care, people would touch my baby soft skin and promptly buy from me as they assumed my skin was thanks to the products. This was before my diagnosis in my mid 20s so I didn't know either.

Oh and I can put suncream on my own back. Both my parents have EDS and all my siblings too - so I used to think people who asked others to put suncream on their backs were just lazy. I was at Uni before I realised other people genuinely couldn't touch every part of their back Blush

Spidey66 · 15/09/2020 09:03

[quote Gingernaut]@Spidey66, because PCOS causes high levels of testosterone, it can cause a kind of male pattern baldness.

Hair on your head falling out with thicker more dense hair growing elsewhere.[/quote]
Ahh.....makes sense.

As I said I didn't see the programme but it doesn't make sense to me why HCPs don't join-the-dots more. PCOS is hardly a rare, unheard of condition. Surely bloods and/or scans can pick it up?

I have an underactive thyroid, another condition which presents with numerous vague complaints which are often overlooked or put down to ageing (weight gain, low mood, dry skin, tired all the timt5e etc,) Yet the method of diagnosis (bloods, though the're is a dispute about when the figures mean a diagnosis should be given) and trepayment are easy.

Spidey66 · 15/09/2020 09:04

treatment

megletthesecond · 15/09/2020 09:07

Some people take the not googling symptoms literally. I always run through a few sensible websites, and MN, before I see a GP. It speeds things up considerably

pepsicolagirl · 15/09/2020 09:07

I think unfortunately that this is what happens when so many GP's are quick to dismiss women - and especially overweight women. Something which affects 1 in 5 women should have been ruled out from the get go.

curcurbita · 15/09/2020 10:01

I agree the diagnoses on this show are for the most part not particularly weird or wonderful and shouldn't have taken so long to diagnose. The problem is they are pretty light on explaining what investigations the patient has already had or what has been ruled out, presumably to heighten the 'mystery' element, so we have no idea how thorough or otherwise previous doctors had been. They mentioned that the woman with blindness in one eye had had several brain scans and I suspect whoever was treating her before had already reached the diagnosis of a functional disorder but she (or her family) hadn't accepted that yet.

aafwan · 15/09/2020 10:10

Im not a medic but I diagnosed Ehlers Danlos Symptoms very quickly as I have the same type the woman on the programme was diagnosed with. I also diagnosed PCOS in last nights. I do wonder how doctors are being trained to take histories and begin to make diagnoses these days. It took me until I was in my 50s to get a diagnosis of EDS but nowadays I’d really hope GPS were more aware of it and people wouldn’t end up reaching my age with no clue what was causing all their various symptoms.

Adelais · 15/09/2020 11:36

I was more surprised by the other woman. Were they suggesting her eyesight loss was psychological?!

Elsiebear90 · 15/09/2020 11:44

I did say this to my partner when we were watching last week as right at the start of the programme I said “I bet she has EDS”. I am a medical professional, but not a doctor, EDS is not even particularly rare, we have quite a few patients with it in cardiology and my partner who is a physiotherapist knows about it, so I’m not sure why someone with such classical symptoms had such a hard time being diagnosed.

BlackeyedSusan · 15/09/2020 12:09

Yeah, also spotted the had/eds lady. Worryingly, I think they might have missed something as well.

For EDS/HSD I recommend the RCGP toolkit on it. Took me 30 years to get a diagnosis!

JacobReesMogadishu · 15/09/2020 17:40

@Adelais

I was more surprised by the other woman. Were they suggesting her eyesight loss was psychological?!
Well I thought it was psychological/stress related within minutes.

I’m off to find the EDS episode as i didn’t see that one.

JacobReesMogadishu · 15/09/2020 17:42

Btw, to all the EDS people here....do you do,yoga, dance or similar stuff? Dd was only diagnosed last week and told to stop dance and yoga as it will make Things worse in years to come pain wise.

AnnaMagnani · 15/09/2020 17:48

In fairness the guy with the dreadful ezcema was being treated by a US army doctor and hadn't realised he was entitled to NHS healthcare.

I think if he'd been turning up to his local GP looking like this panic stations would have broken out.

But yes, so far there hasn't been one patient I haven't diagnosed within 5 seconds of their opening statement and I don't even work in acute medicine.

It's my new favourite programme Grin I am enjoying shouting at the TV saying, well it's obviously not that, you are just filling space!!!

ChiaraRimini · 15/09/2020 17:59

I don't know how much in service training GPs get but I wonder if those who qualified a long time ago are just not up to speed on newer developments in medicine?

Malachite234 · 15/09/2020 18:07

I am pretty sure it’s the way it’s edited. They ask pointed questions which are all in the direction of a certain diagnosis and that’s the only bit they show you.

aafwan · 15/09/2020 18:18

Jacob. I think it’s good advice that your DD has been told not to do activities like yoga, dance, gymnastics as the in someone with EDS these would cause the joints to hyper extend. I hope that the younger people are diagnosed the more their joints can be protected so they don’t end up with early arthritis, tears in ligaments and tendons etc.

AnnaMagnani · 15/09/2020 18:20

You have to do a lot of CPD. However there is so much to medicine and so much change that it is hard to keep up. And to a certain extent. what CPD you do is driven by your own interests.

So just to give an example from this thread - when I was at med school in the 90s, EDS was a rare condition which just affected your skin and joints and gave you such lax skin that you could pull it away from your arm like elastic.

There are prob loads of doctors out there who still think that's the definition of EDS and have no idea we've moved on.

Equally POTS didn't even exist.

We only started doing audit in about 2004.

And that's not even counting developments in treatments of big conditions like COPD or cancer. There are masses and masses of changes to keep up with.