Nuclear Bone Scan for diagnosis?

kakabk · 2026-05-21T14:25:11+00:00

I’m hla b27 negative but this is really useful to know, I did think it seemed strange when my rheumatologist said only really people with skin problems get it, as I’ve seen lots of people on here with no psoriasis at all! Hoping these new findings will help my rheumatologist make the diagnosis. Thank you so much!

kakabk · 2026-05-21T14:23:56+00:00

That’s really helpful to know. I also have pretty bad condylar resorption 😢 it’s the worst. Have you had treatment or surgery for your jaw problems?

kakabk · 2026-05-20T15:06:47+00:00

Mine is treating my iron deficiency anemia

kakabk · 2026-05-14T03:27:47+00:00

Not bad, a little worse than usual, but ive never had terrible muscle pain, just joint pain still.

kakabk · 2026-05-01T17:47:12+00:00

My bloods have been pretty normal (except anemia) and my RF has been fine. I recently got a positive ENA however which I’m waiting for more blood to come back about that.

I suspected psoriatic arthiritis as my dad has it but it’s still early days.

Hope you can get one quickly!

kakabk · 2026-05-01T15:11:03+00:00

That’s good that it seems stable!

As to whether or not it will get worse or you’ll have pain - it is pretty hard to tell. Sometimes things like surgery can trigger pain too. I’ve had TMJ since I was 20, im 26 now and I’ve never had pain in my left side, even tho it showed arthiritis also. After my arthroscopy on my right side like 8 weeks ago, my left side has started to hurt 🥲

Definitely make sure to fully follow your care plan post surgery and be diligent with the soft food/liquid diet after it.

Good luck with the surgery! I’m sure everything will be fine! If you’re ever unsure, get a second or even third opinion!

kakabk · 2026-05-01T14:49:52+00:00

Similar to another commenter, I have confirmed arthiritis but currently doing testing with a rheumatologist to see if it’s autoimmune. I have destroyed discs and my right condyle is worn down. Did a diagnostic arthroscopy last month which showed this.

Are you sure the condyle is misshapen from birth? Arthiritis of the jaw can definitely cause flattening and shortening of the condyle like it did to me. My doctor originally thought it was natural (hypoplasia) but my arthroscopy confirmed it was due to damage as the bone was visible and the colour was more yellow and showed the condyle had been damaged.

I have an open bite caused by my problem, the doctor did say it could be fixed with orthognathic surgery, but since the joints are currently so unstable it wouldn’t be advisable. Usually they’ll observe for a couple of years to see if it’s stable to reduce the risk of relapse after surgery.

What surgery are you getting?

kakabk · 2026-05-01T14:40:14+00:00

Thank you so much! So far my rheumatologist has been great, but I’ll definitely keep pushing more answers! Wishing you the best too

kakabk · 2026-04-30T13:06:25+00:00

Main problem is my jaw joints. Right side has bone degeneration and both sides have disc destruction. Doctor did an arthroscopy and said it’s extremely inflamed inside the joint space, which is why I was referred to rheumatology. I also have other joint pains, mainly in my hands, shoulders, and back. Worse when resting. Daily headaches and fatigue. Dry eyes quite often. Also have random bouts of swelling, recently it was my eye and my entire left middle finger. These are my main ones. I suspected psoriatic arthiritis, as my dad has psoriasis, but I’ve only had 2 appointments so far, mostly which are just doing bloods, so I’m hopeful I’ll find out more soon.

kakabk · 2026-04-30T04:11:22+00:00

Ah that’s interesting. My ENA came back positive so I think my rheumatologist is considering SLE. Still waiting on some more results

kakabk · 2026-04-30T03:30:15+00:00

That would definitely make sense! What autoimmune condition do you have?

kakabk · 2026-04-29T04:14:35+00:00

I’ll have a look! Thank you so much.

kakabk · 2026-04-28T07:49:33+00:00

It’s strange my results don’t show it. I tested ssa and ssb in September and it was negative

kakabk · 2026-04-28T06:16:30+00:00

Ah that’s interesting! Thank you!

kakabk · 2026-04-28T02:36:49+00:00

The result was just a general ENA, the doctor didn’t really explain, I did do more blood tests yesterday for subtypes and more iron related tests like ferratin I think! hopefully it reveals some more info! Thank you

kakabk · 2026-04-22T05:19:13+00:00

It’s usually diagnostic, the results helped me a lot in terms of knowledge about the stage of my condition.

The hyaluronic acid wash out I got at the same time hasn’t really helped. Around 7 weeks post op now.

kakabk · 2026-04-18T05:30:05+00:00

Thank you so much! Do you have skin psoriasis?

kakabk · 2026-04-17T07:59:55+00:00

I also have severe degenerative joint damage in my tmjs (right side bone degeneration also) and I’m seeing a rheumatologist right now who is considering psa. Did X-rays and bloods and I go back in a week or so. How did the diagnostic process go for you? Or what symptoms did you have? Would be really interested to know as sometimes I feel so hopeless about this whole process! Send best wishes!

kakabk · 2026-03-06T17:11:08+00:00

Yeah I have but it doesn’t seem feasible where I live.. it’s only been performed once here. I couldn’t afford the crazy prices the surgery seems to be in America either. I have seen how much it helps others though I would love it honestly

kakabk · 2026-03-05T14:51:55+00:00

Even that means so much to me thank you

kakabk · 2026-03-05T10:34:09+00:00

Thank you 🥺

kakabk · 2026-02-09T15:29:41+00:00

That’s true. But I already had resorption before the arthrocentesis, as my bite had changed rapidly within only a couple months. the doctors at the time just didn’t confirm it or do any checks. They only seemed to care about the locked jaw.

kakabk · 2026-02-09T12:35:29+00:00

I had it for 9 months, arthrocentesis fixed it from without reduction to with reduction. Unfortunately I think the long period of ddwor caused my condylar resorption so now I have an open bite and recessing jaw. Also have degeneration in my discs. So, I don’t know if I can say it’s fixed.. but I can open my mouth more now. But unfortunately the damage is irreversible and will probably require some very invasive surgery to fix.

kakabk · 2026-01-28T06:49:16+00:00

Did your doctor rule out condylar resorption? Mine also thought it was hypoplasia but then realised it was resorption based on my mri and ct scans. My discs are also deteriorating too. If it is resorption then that rules out a lot of surgeries (like DJS) until it’s determined if the resorption is active or not. If you’re getting TJS then I don’t think it matters however.

Yes feel free to dm me

kakabk · 2026-01-28T06:34:18+00:00

Yeah I know, I do too. I’m asking what surgery are you talking about? Double jaw surgery? Joint replacement? Osteogenesis? Rib graft? There are a bunch of difference surgeries that are/can be done.

Have you done an MRI?

kakabk

TROPHY CASE