Annoyed, I spent £275 for a private consultant appt and her summing up letter is incorrect

[CerealPosterHere]

Went to see her as nhs waiting lists are so long. I’ve had an nhs mri and the mri report says I have ankoylosing spondylitis. So paid for their rheumatologist. She asked me lots of questions including do I have Achilles tendon pain and I said no but I have severe peroneal tendon pain in both ankles. Tendon insertion pain can be a sign of AS. She moved on without any further questions. I also forgot at the end to tell her how bad my ankles are (they don’t flex any more, it’s like my ankles are fused). But she was more focusing on my back issues.

anyway just got the letter from her saying no enthesitis (tendon pain) when I do have tendon pain and told her that I do. The letter says if if I have any further questions or disagree with anything to make another appt as issues can not be discussed via her secretary or by email. I assume I’d have to pay another £275.

i still don’t have a definitive diagnosis. She says she’s still considering whether or not I definitely have AS or not and she’s going to talk to a colleague. She says some things indicate I have it but other things suggest i don’t. I worry if she thinks i don’t have tendon pain this will tip her into the balance of thinking i don’t have it. I don’t want a missed diagnosis if I do have it.

bloody hell it’s bad enough to not be listened to in nhs appointments but infuriating when you pay good money and still don’t get listened to!

Email back stating they have sent you someone else else's report as this one doesn't contain the information you provided..

Email back stating that certain information had been incorrectly recorded.

Definitely email back as the information should be correct.
But generally ankylosing spondylitis is diagnosable by x-ray rather than MRI as by definition it involves changes to the skeleton.
Axial spondyloarthritis (which is what I have) involves active and/or chronic inflammation visible on an MRI but not changes to the skeleton visible on an x-ray.
How long will you have to wait to see a rheumatologist on the NHS as if you already have a diagnosis they can generally start treatment pretty promptly - I had a phone call a week after my MRI and the consultant put in a prescription for the medication straight away.

Well this is it I don’t have a diagnosis. I thought I did but now they’re arguing over it. Gp said probably six months wait so that’s why I went private.

the consultant said the axial spondyarthritis thing is the new term for ankylosing spondylitis so think it’s the same thing? She also said she’d have expected there would be more evidence of skeletal damage on the mri report if I had it as I’ve had symptoms for many years. So sounded like she expected an mri to show bone damage? She hadn’t actually seen the images then. She has now and in her letter she said my back pain is definitely inflammatory in nature. And when I googled inflammatory back pain it says ankylosing spondylitis 🤷🏻‍♀️. Just wish I knew what was going on.

Who is arguing over it? The NHS consultant or the private one? Sorry I am confused - you said the MRI report said you had it. Was this from an NHS report
In that case that is basically a diagnosis and I'm surprised that they didn't offer some kind of treatment if you had evidence of inflammatory back pain on an MRI (it would usually be strong anti inflammatories to start plus physio).

Axial spondyloarthritis and ankylosing spondylitis are essentially different versions of the same condition, just that ankylosing tends to show dramatic changes on an x-ray and is a more advanced version of the disease.

There's no one off test as such for it, but the order you've had things done seems weird. Normally they refer to rheumatology, discuss symptoms and do an MRI and then treat based on the results.

Hope you get some answers soon anyway. If you've been told it's definitely inflammatory, first line treatment is physio and anti inflammatories so you could treat with ibuprofen and then ask for naproxen/etoricoxib etc.

So my gp sent me for an nhs mri scan before seeing rheumatologist as he suspected I have AS. The mri report which was written by a consultant radiologist said the MRI shows changes (and detailed them) indicating AS.

That was then sent to an nhs rheumatologist who reviewed the mri report and said they weren’t convinced it’s AS. Asked the consultant radiologist to review again. That was weeks ago, and he hasn’t reviewed it again yet.

I got fed up with waiting and went to see the private rheumatologist who says she’s not sure either. She says I definitely have inflammatory back pain but she would have thought if I had AS there would be more damage showing on the mri scan. Seems like the bone erosion and bone marrow odema is in my spine but not my SI joints and she said it should be in my SI joints…..that combined with no family history and no tendon pain and the fact I don’t have anything like psirosis and the gene test was negative makes her think possibly not AS. But she also said I only had a spine mri and she might want me to have a specific SI joint mri focusing on that. She’s going to discuss me at an MDT meeting next month.

Maybe I just have the axial one then and that’s why there’s not more damage on the MRI? She did also say stuff like bone erosion and bone marrow odema could have other causes.

I have Ank Spond. I'm guessing you're talking about the HLAB27 test that was negative for you.

I usually have an MRI called a STIR MRI which is how they look for inflammation in the spine. It's true that AS does tend to focus on the spine, the sacroiliac area often is the start. It was for me. What is most commonly associated with AS is inflammatory bowel disease and uveitis.

I don't think you're always going to have bone changes evident in scans. If this is new for you then that wouldn't necessarily show up. ( Significant bone changes).

It's possible you have some other type of Autoimmune inflammatory condition. Or it's possible you may have Ehlers Danlos Syndrome. I have that too.

Medication costs a tonne so they're being particular about this now as it's costing thousands to treat people who have AS.

Do you know if you have had a STIR MRI of the entire spine recently? That's what I'd want tbh. The tendon stuff. It is relevant because it helps paint a bigger picture. I'd email and ask for alterations to the letter and spell out what those are.

I think it was just normal MRI.

i do have EDS, was diagnosed with that a while ago.

the letter from the rheumatologist says I can’t email her back, if i want to discuss anything I have to make another (expensive) appt. Which is annoying when it’s her mistake. Guess I’ll wait to see what she comes back with following this MDT meeting.

i did read that the meds are very expensive but hopefully they’re not putting off diagnosing people with it due to that. Though she did say if I had it she’d just recommend physio and painkillers , not biologics.

Ah no no. Someone saying they'd just recommend physio and painkillers if you have Ank Spond. Wtf.

I'd be looking for another one I'm sorry to say. I've seen so many and spent alot.

Yeah I did think that sounded a bit odd. She said only start biologics when the damage is more severe. But I thought the purpose was to prevent damage. Feel like I’ve spent all this money on a total quack.

Her spiel on the website said she has a specialist interest in ankylosing spondylitis so I thought she’d know what she was talking about.

In fairness, I take anti inflammatories and physio for axial spondyloarthritis, under the care of a really good consultant rheumatologist. It's first line therapy and works for a lot of people.

With no skeletal damage visible on an x-ray and no clear sacroiliac damage on an MRI it's not totally clear that the OPs condition has progressed to ankylosing spondylitis 🤷
OP it is really frustrating but I would maybe stick with the NHS (could you phone the department that did the MRI and get an idea of wait times?)

I don't feel confident in what she's saying and neither do you tbh. I do think they're changing tac on it all tbh.

The radiographic evidence is what you need to confirm the diagnosis and it is possible it's not entirely clear.

I do feel that there's a place for many on just NSAIDS and other measures but I honestly don't feel comfortable if someone is of the feeling they wouldn't offer you biologics if diagnosed with AS.

The problem here is it's looking like it isn't entirely clear.

My very first signs were changes in the sacroiliac area. The changes were evident in the bone and inflammation wasn't necessarily active. But what made it is easy to diagnose me was I develop uveitis which is linked directly to AS and I'm HLA B27 positive.

I just read your posts again. There is no real clarity for you ref these scans. So they're saying there's definitely inflammation? Where is that? I'd be after the radiology report myself. Where exactly is the inflammation. Is it active inflammation or is it evidence of historic inflammation and where exactly is this inflammation/ bone change/ whatever the scan showed.

That’s what the report summary says, seems to be in the lumbar area. I can’t see that it actually says there’s inflammation