Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Confounded!

I am so totally confused! I went to see my new Rheumatologist for test results that she gave me six weeks earlier, labs and 17 x-rays. She said she saw no signs of A.S. and my ex-Rheumatologist said that I also, along with A.S. had Enteropathic arthritis. She said from what she see's I have age related Osteoarthritis and no A.S. I told her that I was confused because I had already been dx and had several Dr.s substantiate that dx for treatment. I have several M.R.I.s showing fusion but she is telling me the x-rays tell it all!!!!!!!!!

Pea, so sorry!

I had a rheumy before my current one who tried to convince me all of my stuff was OA including the SI joint degeneration seen on CT. I have OA in my knees (probably caused by the years of untreated inflammation) so I know how that feels. It hurts when you use the knees. But the SI (as you know) isn't anything like that. It hurts when you don't use it. It hurts when you do use it. It hurts.

Oh, I so hope you have the option of finding another doctor!

Find a new rheumatologist. Yes, it might look like OA and age related degeneration, but with a history of 28 years of inflammatory arthritis doing its damage, of course its going to look like that. Xrays don't show "active" inflammation - they only show old damage. Ask for MRIs to be done if you want to see if there is any active inflammation, and ask why they aren't considering that the damage shown on xrays isn't secondary to your 28 years of (diagnosed) AS, rather than primary OA.

When my rheumatologist got the results of the MRI showing advanced AS he didn't want to know about it ,just said find an orthopaedic specialist that's a problem for him not me. Same deal several years back when I had bi-lateral frozen shoulders. He told me to find someone who does saline distension. I thought that was his job. Too well paid ,too comfortable...Money for nothing and kicks for free. I have a short list of doctors I really like and a very long list of doctors who will not see me or my money again.. Ron.

I'm still going to the Mayo clinic in a week and a half and hopefully they can refer me to someone else locally.

Some (probably most...) doctor's just don't know what they're talking about when it concerns AS. I'd just be on the hunt for another doctor.

Rofl. Sounds like he was real motivated to helping his patients. What a class act.

Hope you find a good rheumy soon. Mine said AS is harder to control than RA. He is a GREAT rheumy.

There are good and bad rheumies... when I lived near Cleveland, Ohio I went to the Cleveland Clinic... it is one of the top hospitals in States and the Rheumy department was supposed to be excellent.

I encountered worst rheumy at the Cleveland Clinic... 1-2 months later I saw a new rheumy at small practice just outside of small town of Chardin, Ohio and was my favorite rheumy in all my years with AS.

Best to you

Tim

Pea, a good rheumy that understands AS can be so difficult to find. I was so lucky to find my rheumatology team when I was diagnosed. Then I had to move and the new rheumy tried to undiagnose me. Right down to MRI and re-doing my HLA-B27 test. Luckily, both came back positive.

Also luckily, I had my medical records to prove that I had been on biologics for five years, so there was cause to continue those (I'd have been screwed otherwise) but she never scheduled follow-ups and didn't even bother to do the basic screening done when a patient is on an anti-TNF. The only reason I was kept on her roster was that I kept up contact with her secretary.

18 months after my first visit, I finally had a follow-up ... with a different rheumy. Who booked me another appointment for six months later.

The rheumy who saw me that time had no explanation for the lack of response by the first new rheumy, but at least had the grace and courage to admit that I had been [*bleep*] over by that rheumy, and that it should never have happened.

I now have regular follow-up appointments and bloodwork done, as should have happened from the start. Persevere, Pea. Sometimes, we have to be our own best advocate. Even after diagnosis.

Love and warm hugs,