How to get a diagnosis?

[Lulububs]

Hi

I explain a little, im 45 , have had body issues all my life, dislocations, joint pains, injuries, gastro pain.

Roll on to now and i have been told various times “ oh do u know ur hypermobile” , never though anything of it.

2 years ago another accident of two herniated disc in back and ended up at a nhs physio and she said give me ur background from years back?

I thought it was weird but when i started telling her she nodded and went “ i want u to see my colleague. Went back two week later to see her colleague and found out it was because she saw me and suspected “EDS” , i had no idea what this is but when she explained it was like a light went on in my head.

So she said “ im goin to write to ur dr as he needs to diagnose this just so u get the medical help “ ie pain killers and muscle relaxants blah blah.

So today i go to dr and he had the hump from min he read her letter... he said “ im fed up of all these specialists and there SYNDROMES!!!”

I was so annoyed i was speechless..

He is sending me to a rheumatologists but he just kind of poo pooed it to my face?

It no good complaining as he is the head of the gp surgery and he wasnt rude or horrible he just doesnt believe there is such thing and because i couldnt put my neck skin over my face ?? I didnt have it....

HELP???

[Anne2018]

I’m so sorry you have gone through all this for most of your life, finally get some answers and have your GP shut you down. Change your doctor, he has no right in making you feel like that just because he doesn’t know about EDS. You have a right to be supported by your GP, good luck 😉

[cyberbarn]

You need to go to the Practice Manager of your GP surgery and make a formal complaint. If they do it properly they will ask you what you want the outcome to be. Say an apology from that GP, and for another GP to use the Royal College of GP's EDS Toolkit to diagnose you. It isn't worth going to a rheumatologist as they are not experts in EDS generally, although there are the odd ones here and there that might be.

Have a read of the RCGP website and take the URL with you. there is a check list there and you might want to print it off and check off the ones you know you have, and put a question mark by the ones you are unsure of.

rcgp.org.uk/clinical-and-re...

GPs like that need to realise that their ignorance of some of these syndromes are why patients keep coming back time and time again. if they would just listen to them and diagnose them, then they wouldn't be so busy with too many people wanting appointments.

[Lulububs in reply to cyberbarn]

I find that gps really do not like other people diagnosing u, he seemed to have hump with me because my physio had diagnosed it! She is a EDS physio , i was sent to her by another physio as she recognised it ...

He seemed really put out by this..

“ the amount of people i see through the day that diagnose themselves through google( which i never did)and these so called specialists keep sending me patients with these SYNDROMES “ that what he said????

He did say il send u to a rheumotologist but they prob wont have a clue on EDS either!!

Helpful?

Thing is he cannot send me to the specialist as there all in specialised hospitals and most are private or it not in his budget to send me to london...

So looks like il just have to carry on like i have for past 30 years

[Bek85 in reply to Lulububs]

When you go to see a rheumatologist they’ll probably diagnose you with Hypermobility lsyndrome, my Rheumatologist said it’s very unusual to get a EDS diagnosis from a rheumatology department. As far as treatment goes Hypermobility is treated with the same treatment as EDS, which is a specialist physiotherapist (has to be a specialist so they know not to push too hard with the physiotherapy.

I’m in the same boat, I think it’s terrible to label people with Hypermobility syndrome when they absolutely fit the criteria of EDS, it’s concerning because EDS comes with lots of other complications other than joint issues so there’s a risk things could be missed because the wrong diagnosis is being given to many.

Oh and your GP sounds as rubbish as mine, mine told me there was no point in me getting any diagnosis for my joint issues because if it was EDS nothing could be done. I insisted on a referral anyway.

I’m going to change GP because his overall attitude to everything stinks, he’s so dismissive and patronising. Perhaps it might be an idea for you to change GP too?

[Lulububs in reply to Bek85]

See the thing is my gp is fabulous in every other thing he has fought my corner even done things he shouldnt coz he know i hardly ever go to dr aless im literally dying but this time... not so good... he said same “ what are u wanting from this diagnosis , it cant b cured, u wont get anything from this?”

I said “ i want to know why since i was 15 i been in pain? Why at 22 i had to have a jaw op and knee op!” Why i get up every morning and something else hurts!

Just want a answer?

Also like my physio said “ it may not b eds it mayb arthritis or osteoporosis, which also needs diagnosing”!

So he has agreed to send me to a rheumotologist so thats something.

Was just a bit put out that he was so dismissive of any syndrome....

He was like “ oh everyone wants a syndrome nowadays” which made me feel like i was being a hypochondriac which is far from truth.. i take no pills, im fit, im a full time worker ... so nothing will change for me.

I just want a answer

[AiMax]

Hi Lulu.

You can change your GP. If he snubbs you like this he is breaking his code of conduct for all GPs, and his behaviour is outrageous. He should be caring for all your health needs and not picking and choosing those he will investigate and treat. There are far better GPs out there even may be in the same surgery. You are entitled to high quality care. You need it.

If you want to complain you can. He is still accountable. I would do it in writing and keep a copy. It needs to be sent to the surgery manager. GP surgeries have to abide by complaints policies are assessed regularly by the Health Quality Commission. No GP is unaccountable.

Sorry I've gone off on a tangent. I used to work in a surgery and it makes my blood boil when GPs are there for themselves and not for the patients they are supposed to care for.

I wish you the best for your dermatology appointment and I hope you receive answers about your health you deserve.