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Which autoimmune condition is this?

(102 Posts)
Sunmoonearth Sat 12-Oct-19 18:53:15

Had hip and low back pain for 10 years. Been back and forth to GP and mostly ignored.
Finally referred to an orthopaedic consultant in May. After MRI diagnosed acute sacroilitis.
Sent for physio and pain management consultant. First pain person was hopeless.
Saw someone else who repeated MRI (same again but saw wear and tear on hips as well). And he referred me to a consultant rheumatologist. Blood test was ANA positive. Also positive for Anti Thyroid Peroxidase (261) and anti thyroglobulin (940).
Normal thyroid function maintained apparently.
He didn't really say anything to me during the appointment but wanted another MRI of a slightly different area (the 4th MRI since June!!).
I'm really fed up. No one has helped me with my pain at all. No one has given me any tangible advice. No one has prescribed anything to help me at all.
The physio is excruciatingly painful and she isn't helping me at all. It's so painful afterwards I need to take lots of codeine based painkiller afterwards and I'm usually in tears.
Oh and I have had a DEXA as well but no signs of osteoporosis at all.
Anyone help with what all of this means? Anyone help me with a best guess?
I can't understand why 6 months of investigations and endless xrays, MRIs and blood test and none of the consultants are telling me anything.
This is all private via insurance. They've all promised to write to me but never do.
All they do is ask me back for more appointments and tests.
Please help me find some sort of a solution to all of this.
Tia. thanks

Sunmoonearth Sat 12-Oct-19 18:57:25

Oh and I also have high blood pressure (160/98 or more). GP has never offered treatment.
And I have recently found out I'm very deficient in B12 (level was 106).
sad

BareGrylls Sun 13-Oct-19 11:46:33

I had this experience when I had health insurance. A merry go round of expensive tests and no conclusions. Perhaps the NHS would serve you better? I don't know anything about high blood pressure but aren't there national guidelines about when it should be treated?

Sunmoonearth Sun 13-Oct-19 14:24:30

Thanks Baregrylls. sad this is what I was afraid of.
Sadly GP has always been completely unhelpful. So I wouldn't expect any help there.
Do you think there is any way of insisting on some sort of conclusion?
A report perhaps?

thisisthetime Sun 13-Oct-19 14:56:25

They probably don’t know. There seems to be so much that they can’t diagnose yet simply because they don’t know. In my personal experience I was fobbed off for ages then finally helped myself with pain and other symptoms through my own research. Sad that it comes to that .

In your position I would consider seeing an osteopath and also get started on b12 injections as being low can cause many symptoms. I would also keep your diet as clean as possible and keep hydrated as that can make a difference however small. Joining Facebook groups with people with similar symptoms helped me as well as others have sometimes worked out different coping strategies or can recommend a good specialist doctor.

Sunmoonearth Sun 13-Oct-19 18:59:03

Thisistime.
Thank you. Very useful advice!

It's slightly disconcerting that they don't know and don't seem to be able to tell me anything useful.

The GP refused to give me the B12. Apparently too expensive hmm

I've never been to an osteopath. DH is dead against them. His mum spent several years bed ridden after seeing one.
Bit worried about trying tbh.
Also don't like the idea of being pulled around as it increases pain hugely and for days after.
Last week after the consultant rheumatologist examined me and pulled me around, the pain went up and it was so bad I couldn't work part of Wednesday.

Anyone had positive experiences with an osteopath?

Stopyourhavering64 Sun 13-Oct-19 18:59:45

Sounds like it may be ankylosing spondylitis www.nhs.uk/conditions/ankylosing-spondylitis/
Have you had blood test for HLA-B27 which can be diagnostic of AS
I'd push for further blood tests (ANCA) and asked for a 2nd opinion
If current analgesics not helping it may be that you need to be started on steroids and a disease modifying drug
Good luck..unfortunately autoimmune disease mimics many other illnesses and can be very difficult to diagnose as GPs and non rheumatologists see few cases in their careers

endofthelinefinally Sun 13-Oct-19 19:03:55

Can you change GP?
My friend has autoimmune arthritis and only got a referral to a rheumatologist when her gp was on holiday and she saw a locum.
The nhs physio damaged her joints and caused dreadful pain. I don't think physio is advisable prior to a proper diagnosis.
As for the gp refusing to treat your B12 deficiency, that is inexcusable.

moreismore Sun 13-Oct-19 19:05:30

My first thought was ankylosing spondylitis. Usually manual therapy (physio/osteopathy/Chiro) is helpful (but not curative, this is a chronic condition) but I’m very surprised you are being treated during a ‘flare’, this is contraindicated. I’d suggest waiting until pain is under control then look for someone with gentle technique like SOT chiro.
Try to limit anything inflammatory so refined sugar, alcohol, etc. Stay hydrated, rest, use ice and heat to manage pain. See a naturopath for advice on supplements (a Chiro could also advise on this). I hope you are in less pain soon.

Sunmoonearth Sun 13-Oct-19 19:35:35

I want to cry. Thank you all so much!

I've had more helpful advice today here on MN than in months and years seeing so called specialists.

The consultant rheumatologist did do a blood test for dnahlab27 2 weeks ago but won't hand the result to me unless I make another appointment (at £300 a pop!). Insurance is picking up the tab but that's not the biggest cost issue. Bigger issue is taking a day off work to go to London (I'm in Kent) and I'm effectively self employed running my own business so that consultants fee pales in comparison to the loss of earnings and business.

I am cancelling the physio immediately! I had actually asked her for manual therapy and acupuncture and she said I needed hardcore exercise.

I wonder if she damaged my right hip?
My June MRI shows no hip wear and tear but my October MRI shows right hip wear and tear and I have excruciating pain in my right hip after physio for a few days.

endofthelinefinally Sun 13-Oct-19 19:39:52

That consultant is shocking too.
My private consultant emailed me my test results. I paid for the tests, after all.

Sunmoonearth Sun 13-Oct-19 20:16:16

I'm going to email tomorrow and ask for test result to be emailed and I'll phone my insurance company and ask to see another rheumatologist.

This one I was referred to by the pain consultant (work in offices next to each other) so not my choice at all.

And I'm going to find someone local so I don't have to faff around going to London.

I only ended up going to London for the pain management consultant because There wasn't one particularly local to me. And that pain consultant was recommended by the physio.

Argh. It's a bloody nightmare.

So tomorrow. Bin off physio and demand blood test results.

Then what. GP and demand B12 injections?

endofthelinefinally Sun 13-Oct-19 20:52:35

Google your local hospitals for their rheumatologists. Then look them up and see what their special interests are, and whether they have a private practice.

endofthelinefinally Sun 13-Oct-19 20:53:28

Google NICE guidelines for B12 deficiency.

moreismore Sun 13-Oct-19 20:54:15

It sounds like you’ve seen a lot of different people and been bounced around. Personally, I would focus on finding a local rheumatologist with a good reputation and get them to coordinate what you need (including supplements, medication, further testing etc) then it’s all covered by insurance. I’d also email previous private doc and explain you’re finding someone more local and want results emailed (they may not be able to send encrypted email? But should be able to post. I think you could quote GDPR legislation if necessary as you’re legally entitled to view information that they hold about you). I hope you get some relief and some answers soon.

ToothlessIsMySpiritAnimal Sun 13-Oct-19 21:38:49

I've going through similar currently, just seen a rheumatologist and he's said I have fibromyalgia and pronounced wear and tear of my lumbar, hips and inflammation of the sacroiliac joints. Prescribed pregabalin and told me to lose weight to ease pressure (I'm not huge).

I forgot to ask about the blood tests but my friend suffers with AS and she suggested that my symptoms are an exact mirror of hers, and apparently it only shows up when you're having a flare. I'm seeing him again in the new year, but he is convinced that whatever else that I do have fibromyalgia. The pain is awful and I can't get round the supermarket on the weekly shop without severe pain and my leg starting to drag behind me.

I've forgotten what it's like to not be in pain.

Has fibro been mentioned to you?

Sunmoonearth Tue 15-Oct-19 12:09:47

Phone call with GP. I started B12 supplements 3 weeks ago and my levels have gone from 106 to 424.
Don't understand. I eat meat etc.
It's odd. Anyway that means deficiencies are now ruled out as causing issues.

He doesn't want to do anything else (or be helpful) until he hears from rheumatologist. Argh.

Notmyideamovingon Sun 20-Oct-19 15:39:30

As our psoriatic arthritis. Both take forever to diagnose. You could be sero negative and not have raised inflammation levels in blood tests. Don't be fobbed off. Great advice on nass website. Don't take anti inflammatories before tests mri etc.

Sunmoonearth Thu 24-Oct-19 00:07:12

Finally got some information.

Axial spondylarthropathy - sacroilitis, wear and tear on right hip with signs of ischiofemoral impingement both sides on MRI. And hip bursitis and odema in ligaments.

Lots of things that are hard to spell.

I just had letters stating this. No one offered anything apart from pain consultant who offered a diagnostic injection of local anaesthetic into sacroiliac joints. If that works he would perform radio frequency denerveration. However said my case was a 50% of pain relief. So two expensive and painful procedures without certainty.

Plus this doesn't deal with the pain from Impingement or wear and tear or bursitis.

I'm confused and still in pain and no further forward.

I've gathered all this stuff and made an appointment with GP for tomorrow.

Not sure what to do now. confused

moreismore Thu 24-Oct-19 11:12:44

Thanks for update.
The bursitis can be managed a bit at home by releasing the muscles in your glutes sitting on a tennis ball and applying ice to the outside of your hip for 15 mins every couple of hrs.

moreismore Thu 24-Oct-19 11:14:04

There isn’t a good correlation between wear and tear on imaging and symptoms so try not to dwell on that, it may not be contributing at all.

moreismore Thu 24-Oct-19 11:15:41

I would recommend seeing a manual therapist such as a chiropractor or osteopath, I think a lot could be done to help you. Contrary to popular belief they won’t crunch you and make you worse, they should use gentle techniques (look for an SOT practitioner) and can also advise on exercise and nutrition/supplements to help. I hope you manage to get some relief soon.

OhYouBadBadKitten Thu 24-Oct-19 11:25:10

I have sacroillitis as part of my psoriatic arthritis. My first denervations didn't help for long, but my second ones made me pretty much pain free apart in that area from some flares. This was on the NHS. The only downside was the really long waiting list.

OhYouBadBadKitten Thu 24-Oct-19 11:27:08

I'd be asking the GP for a referral to an NHS rheumatologist to get in the system. Rheumy meds are expensive.

Sunmoonearth Thu 24-Oct-19 11:46:14

Moreismore. Thanks for the tennis ball tip! And the osteopath tip. GP had previously suggested this but I was extremely wary about anyone pulling anything about.

Kitten. That's a brilliant idea. The medical ins will only pay for one or two rounds of inpatient treatment and outpatient meds I'd have to pay for.

Seeing GP later today. I'll come back and update this evening.

I've got lots of other symptoms like crushing tiredness and tummy aches that I had been blaming on life in general and now I'm pretty worried it's connected to this and I'll never be myself again.

Thanks for the info. Brilliant thanks

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