To wonder why GPS not taking seriously

[DollyPartons]

Dd14, has long term pains in legs since 6yrs, stomach aches, extreme low energy and struggles with ligh sensitivity, tingling in feet .Whilst not the worst thing in world to have, doctors quick to dismiss , like oh yes menstral cycle or bit of gastric reflux or growing pains.....
What for 8 years , continuously? A.i.b.u?

One GP or several? It seems very strange that a number of GPs would dismiss multiple concerns spanning years. Has she had any tests for anything?

Sounds like EDS, ask for a rheumatology referral.

@ComtesseDeSpair

One GP or several? It seems very strange that a number of GPs would dismiss multiple concerns spanning years. Has she had any tests for anything?

Not strange at all. My OH was going to the GPs (various different ones) for about 4/5 years with various complaints (easy bruising, tiredness, extreme nausea, aching bones etc), until a locum ordered a different blood test which confirmed a diagnosis of bone marrow blood cell cancer. When we looked it up, his symptoms were text-book, but a succession of GPs over a few years didn't think to even do a blood test which would have picked it up. When he was finally referred to the haemotology consultant and they did the formal testing, she said she'd never seen a case where the blood test markers were so high in a newly diagnosed case and said he must have had it for years, especially given the symptoms he'd been to the GP for repeatedly.

A locus picked up my friends mums cancer too after her GP's (a few) had kept dismissing her.

I'm going to try to book a locus next time as the way I feel is NIT right and I'm massively fed up of being brushed off!!

Badbadbunny, that's awful and quite alarming. She had had bloods over the years but no referrals. She's been vitamin d deficient, I give her d3 1000 daily , s multivit with iron.

I've looked at EDS @madcatladyforever, she is very bendy , definitely hypomotility but doesn't meet the rest of the symptoms.

She was never a hypochondriac , but googling recently led her to m.s! I would just like one g.p to suggest a referral. We are not often at the doctor's as it's not an emergency and so hard to get appointment. I would just like one day of her completely pain free.

DP went to the GP bright yellow with jaundice, the GP faffed about doing various blood tests despite the first test showing his bilirubin levels were through the roof. We are still battling to get the tumour wrapped around his bile duct diagnosed while various surgeons screw up his biopsies. This has been going on since the end of July and no-one is helping or listening.

Have you looked into JIA?

@ComtesseDeSpair

One GP or several? It seems very strange that a number of GPs would dismiss multiple concerns spanning years. Has she had any tests for anything?

25 years my Mum was dismissed as being depressed when in fact she had a treatable autoimmune condition - pains in her hands, feet and intercostal muscles.

@WhoAmIWhoAreYou

Have you looked into JIA?

Also Jia can cause eye problems.

My goodness these dismissed or overlooked cases are shocking, I'm sorry for everyone having such awful times

You end up being your own, or your child's, advocate.

I've found my GP surgery very slow and uninterested regarding my rheumatology / auto-immune problems. Had to push and push for referrals, to the extent that I ended up involving Adult Social Care (for myself). Long story.

We have a complete blind spot about the NHS in this country and I'm afraid a lot of it is unbelievably crap. I read a story about someone today who took their son to Germany to get a diagnosis because they were being constantly fobbed off by their GP. It took four days to find out what was wrong.

The rut we have got into thinking the NHS is above all criticism is doing many of us unimaginable harm, including lots of dedicated people who work in the NHS. It needs absolutely massive reform.

This is an alarming read too. link.

I would just like one g.p to suggest a referral

Don't wait for someone to suggest it. Write out a log of her symptoms in as much detail as you can. Insist on an appointment with a GP. Tell them that you want a referral for further investigations. And make it clear to them and to the next set of doctors that you are going nowhere until you get to the bottom of this.

It's possible that you may not ever get to the bottom of it. But you won't if you "aren't often at the doctors". Take up residency if you must! Unfortunately, a lot of time has been lost. What comes to mind for me - and after six years it would be impossible to diagnose, would be some form of post-viral syndrome. The vitamin d deficiency, odd pains and fatigue are classic symptoms. And occasionally in children (these conditions are rare, but do happen) it can last for years and years, sometimes even into adulthood. Commonly it disappears in late adolescence, but it isn't well understood. Some inflammation of the spleen is common in these conditions, and that can cause all the symptoms you describe.

@TonTonMacoute

We have a complete blind spot about the NHS in this country and I'm afraid a lot of it is unbelievably crap. I read a story about someone today who took their son to Germany to get a diagnosis because they were being constantly fobbed off by their GP. It took four days to find out what was wrong.

The rut we have got into thinking the NHS is above all criticism is doing many of us unimaginable harm, including lots of dedicated people who work in the NHS. It needs absolutely massive reform.

This is an alarming read too. link.

Also the whistle blowing book by NHS consultant Peter Duffy

www.amazon.co.uk/Whistle-Wind-detriment-dismissal-whistleblowers/dp/1082231967?tag=mumsnetforu03-21

It's shocking how the NHS has achieved religion like status and appears beyond criticism.

I have spent most of my life in pain with similar symptoms to your daughter. It ruined my teenage years and adulthood to date. I just thought it was my normal but went to the doctor recently for depression and told her about these other health problems. She seemed really shocked that I had had them for almost 30 years and has been very proactive in trying to figure out if there is an underlying problem, so many bloods and other tests, no answers yet, but it is just a relief that someone is listening and not dismissing everything as nothing. I keep wondering if I'd met this doctor sooner, life could have been different.

I hope you are able to find a decent doctor who can help your daughter, it really is sad that there are people persevering through life in pain because no one wants to listen.

Save up for an appointment with a private GP. Your normal GP is unlikely to want to pursue anything which will end up coming out of their surgery’s budget, and is probably hoping you’ll get bored and stop coming back.

Agree with others who say that the NHS is above criticism. It is good at some things (critical care), but terrible for long term and chronic conditions.

I'm glad I'm not the only one, but if it was bad before, now's going to be worse after backlog.

@DollyPartons. If she is hypermobile, but doesn’t meet the criteria for EDS, she may have Hypermobility Spectrum Disorder, which can be just as severe and have all the same comorbid conditions.

Have a read of the EDS GP Toolkit here and see if you think it fits. If it does, take the checklist with you t the GP and ask for a referral. Rheumatology can still diagnose, but tend to hate ‘labelling’. General/Community Paediatrician should be able to see her and refer on for relevant referrals.

(The tingling and light sensitivity can relate to autonomic dysfunction, which can be related to HSD.)

You do have to keep pushing. It took me 14 years of watching my daughter suffer strange bizarre symptoms from a baby before they finally referred her to a consultant who was unbelievably thorough. She had read the whole of my daughters 14year medical history and diagnosed her with fibromyalgia and abdominal migraines. We felt relief at finding out finally what was going on but we were left with the diagnosis and no further help! We had some private tests done that aren’t available on the NHS and found out exactly what she was lacking in and what type of Fibromyalgia she has and have changed her lifestyle and diet accordingly.
Actually some of your daughters symptoms sound similar including the tingling in the feet, lower leg pain and stomach aches but I’m not a doctor so wouldn’t want to diagnose.

If I found a consultant that was thorough @MellowMelly, I would probably turn cartwheels. You were lucky to eventually get through the system. I've made up my mind to be so much more assertive and politely make health advisors aware I'm not going away as I'm aware 16+ adult age and apathy years, so probably won't be bothered to deal with herself. Fybromialgia has crossed my mind lots.
@Mellowmelly, I've glimpsed over EDS before but dismissed due to not having stretchy skin etcetera. Gobsmaked that I may have dismissed too soon

My EDS symptoms were dismissed for around 20 years. I wouldn’t rule it out based on not having stretchy skin. The pictures that you see online are usually people with Classical EDS whereas hypermobile EDS is usually just mildly stretchy skin and it’s only one aspect of the criteria so not everybody has it. I would see if you can get a referral to one of the EDS specialists to save you being fobbed off again. As moosemama says there’s always HSD as a diagnosis if hEDS doesn’t fit.

This thread has been so enlightening. This is how I describe DD 14 since baby/ toddler:
Multitude of sensory issues since baby;
Hypersensitive to hot/ cold, extreme low threshold to pain. I very quickly learnt that it wasn't her "being spoilt" . Likes nothing better than to conform so doesn't make a fuss, teachers, coaches largely not aware, sometimes can be labelled as bit difficult but they can see it's not defiance;
Bright but slightly lower than average academically. Terrible concentration. Slower than average to grasp but becomes as good as anyone over time. Pains put her off school the most.
Dry eye, visual disturbances but only small prescription required. Slight colour hint and anti glare fitted though.Does not tick boxes for dyslexia.

Tires easily but no sleep problems.

Very bendy/hypemobile but dismissed as only level 2 on Brighton score;

Pain not noticed during dance/gymnastics but at all other times.

Loathes walking. Walked a bit on tiptoe,feet turned in but rightened over the years. Latest thing is a tightness in throat during walking and cycling, becomes extremely zapped of energy after 10 mins of this. Dizziness particularly in standing . Standing still is a major problem, more do than walking ; as she gets older , feels faint. Always had light sensitivity but says sun glasses do not help. Takes sun well but says it makes her feel not well even when hydrated and cool.

Stomach aches, that moves middle to sides only significant in last year.

Sociable enough but limits friends due to being worn out and crowds are just a no go.

@DollyPartons does she have any other symptoms?

I think the problem is they half hope the child will outgrow the symptoms. My daughters leg pain was initially diagnosed as growing pains. They only started taking me seriously when it started affecting her hips, back and neck and she was struggling to walk comfortably. She was seen by a specialist at Great Ormond Street who did the Beighton test on her and although she is extremely flexible she didn’t meet all the criteria. It was him that mentioned fibromyalgia and referred her onwards.

It just takes the one right person to help get the ball rolling!

Sorry cross posted with you!

My mum was dismissed for 42 years about having EDS and insisted she wasn’t ‘just bendy’ had a temp doctor who had EDS and diagnosed her, I’m going through the process myself now and they’ve diagnosed me as hypermoblie ‘because the treatments the same’ even though EDS comes with a whole host of other issues, it’s sadly a very very common thing