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Autoimmune disease

Which autoimmune condition is this?

101 replies

Sunmoonearth · 12/10/2019 18:53

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

OP posts:
Sunmoonearth · 07/12/2019 18:54

Durgasarrow. Thank you. I had a lot of help via DHs gold plated AXA insurance which has paid for literally everything so far!

Without AXA I wouldn't have a diagnosis, referral or physio. Nothing.

I have also had help with the NHS side. DDs schoolfriends mum works for the local CCG. I asked her where I could find information about guidelines etc and she asked why. I told her the whole thing and she offered to come along to my GP appointment on Friday.

Very effective! I now have NHS referral for all specialist clinics for my condition. She also contacted the top local pain consultant last night to see what other advice there was.

She's been lovely and amazing. Now I've got to get to grips with the next stage of anti TNF and special physio.

OP posts:
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