To take DH to A&E

[DontGoIntoTheLongGrass]

I'll try to make this quick as I have a habit of rambling on.
Basically dh wants to be tested for a genetic condition which his dad has which fuses the spine. He has every symptom. Dh is at the point now where he cannot move for the pain and he is getting no sleep because of it. He is on strong meds but they do nothing. An x-ray is required for diagnosis but the doctors will not refer him for one. They give him more pain meds which dont touch the pain.
Aibu to take DH to a&e to try get the x-ray next time he wakes up in the night screaming in pain? Sorry if this is a stupid question but I know the consensus on mn over wasting the doctors time at a&e. I'm just struggling to see my DH in so much agony every day.

Really pleased about your update

I've only just read your thread and what the first dr told you is bollocks. You don't need anti-inflammatories to reduce the swelling to do the X-rays - you are doing the X-rays to see what's there! If there is swelling, that would be really really interesting. Plus the changes caused by ank spond are very characteristic. Plus if he has ank spond, the anti-inflamatories probably wouldn't work anyway. Locally GPs can do the blood test but it may be different where you are. Rant over.

Am so glad you have your X-ray card, and rheum referral - wishing your DH all the best.

I despair of some gp practices. Both practices in my area, do blood work it does save a lot of time you get quick results. If you need an x ray they make an appointment and you go to the local hospital immediately. My OH saw the same GP three days running as the results came through. Scared the life out of us with the urgency of it all, but we are grateful for their system.

I hope your DH sees the consultant quickly to confirm or rule out certain things.

Well done you for being there and being so firm, sometimes that it is what is needed sadly.

I had an x-ray today for suspected Ankylosing Spondylitis. The GP said she isn’t allowed to request a spinal X Ray (I don’t know why) so she requested an X Ray of my hips and pelvis to include sacroiliac joints. I had the blood test for the genetic marker a few days ago. I would encourage an early diagnosis as treatment can slow this condition.

I'm glad it's being taken seriously.

Im not sure if your oh is working at the minute, but if he is he may want to look into access to work. It may be able to pay for transport (taxi) if he is unable to drive, equipment at work such as special chair or desk etc. Worth looking into. www.gov.uk/access-to-work

I have AS and like others, was misdiagnosed for a long time and just told I had general ‘inflammation’. I was lucky enough to then get a job with private healthcare and within weeks I’d had surgery on my inflamed knee and referral to rheumatologist in same practice. He tested me and I do have the gene, yet no one else in my family has AS. Once diagnosed I was moved into NHS and saw my rheumatologist at nhs hospital instead. I then had to try a myriad of drugs to see if they would help (tramadol, diclofenac, naproxen and finally methotrexate, which meant monthly liver function tests). As no luck with those, after about 18 months I was moved onto ANTI-TNF meds(that I inject x 2 a month) which have quite simply changed my life. I have gone from not being able to walk when having a flare up to playing a high impact sport twice a week (netball). Keep pushing OP, the route is the rheumatologist, do whatever you can to get him referred. Good luck to you both (PS as a PP suggested, check out NASS, a wonderful organisation).

Piratemother - the pain in my sacroiliac joints was unbearable at times, I understand what you’re going through. Good luck to you (and any others) too

Good luck OP. My Dad was in so much pain with his back that he was unable to get into position for the MRI/tests needed for his prostate cancer. He was screaming in agony. The nurse there actually urged him to go straight round to A&E, where he was diagnosed with a serious spinal infection. The doctor had been fobbing him off about the back pain for ages.

I'm glad you took the advice to go back to GP and not go to A&E.
I'm pleased they have referred as expected. Just don't be surprised if you hear from Outpatients within a week but the appointment is several weeks away as the NHS is severely underfunded and understaffed. More Docs leaving than joining.
Good luck and let us know how he gets on.

Or request a referral to a private consultant. Initial consultations whilst not cheap are usually affordable (less than an iPad) and if DH does have the feared condition he’ll then get moved to proper NHS treatment.

A lot of Healthcare trusts have a genetic medicine dept. It might be worth getting in touch with them OP

Make a GP appointment with a different GP, go with him and write down sleep diary effects on life etc. But if pain is out of control then go to a and e, you will be prioritised so everyone else will probably go ahead of you but if anything serious should get spotted. I recently phoned GP and consultant got fobbed off and ended up in A and E and turned out I urgently needed medication (which the gp could have prescribed), GPs are human, they make mistakes and are overworked, trust your gut instinct.

Here are the Nice Guidleines:
Your husband needs a referral to the Rheumatologist. A&E is not a way to get a referral, change GP’s make a complaint to the practice manager and read the guidleines. Hope you can get it sorted out. Sounds awful for him.

cks.nice.org.uk/ankylosing-spondylitis#!scenario

Sorry when I looked there was only a few posts! Glad you got your referral tho.

Ps: the post about the GP not being allowed to request lumbar spine X-rays... is true the guidleines have changed and plain films for lower back pain are not justified these days.

I would go to GP with dh and ask why he is not being sent for MRI scan. If refused change GP or ask to go privately if he is in agony it is money well spent. My Mum had this and had operation several years later my sister developed identical symptoms and in agony and signed off from work for almost 2 months on Tram pain killers and codeine GP refused her MRI scan do she had it privately and had operation on NHS about 6 weeks later.

Your GP, even after eight years' training, simply does not know what he is talking about, whilst the chorus of unqualified know-nothings on here obviously do.

It's foolish to think that doctors know it all, particularly about rarer conditions. That's why there are medical specialities.

Geordie - some don't. One told me I couldn't have my condition as an adult because it was a child's condition that they grow out of. Another has told me my incurable abscesses are "just a spot or two"

I second getting a private consultation if you can. The waiting lists for some things in some areas are so long. I found my own specialist the GP was happy to refer me I paid for the consultation.

If GO won't agree to x-ray or testing could you afford to pay for the blood or genetic testing. I hate having to suggest paying but it may put your mind at rest so would be worth it.

Totally agree StillMedusa. Although you won't get the diagnosis in A&E, if he's screaming in pain, call an ambulance. You can insist that the GP sends him for an x-ray and blood tests. I would complain to the practice and change GP.

The GP could be penny pinching. Practices pay for grays and referrals. However every trip you make to A&E costs the practice about £150-200 from the minute you check in whether treated or not.

Great update OP. Hoping everything runs smoothly for your DH.

My dad has AS, luckily neither myself or my brother show any signs, but this has been a helpful thread to read in case either of us need to see our GPs about possible symptoms.

Go to A&E I discovered the hard way that sometimes you need to do it to speed things up, the hospital hasn’t got the same criteria that you need to meet before the option of an X-ray given

OP, go to A&E, find another GP, go private and don't you dare tell the doctor what your OH may have. They can figure it out alone with their super mighty heads.

And, on the way, cancel that cheque.

I hope it goes well. My dh has AS - he was diagnosed with an x-ray and had a series of physio appointments which really helped a lot. He hasn’t suffered too badly from it at all since then.