Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS ruled out by second opinion, what should I do ?

Hi everyone,

first was diagnosed in the spring by rheumatologist based on MRI that showed inflammation in the sacrum and pelvic. Today I got second MRI on the whole spine and sacrum and it showed no inflammation, it did show some hernia related issues , but no AS. I don't know who should I trust. NSD helped me with the pain, so I guess the inflammation went away during those months ? If AS is not active does that mean it won't show on the MRI ?

Welcome to the world of flare/remission teeter-totter. Two MRI's does not make a diagnosis of Spondylitis. You need to be seen by a Rheumy in which if other symptoms and tests point toward AS then a diagnosis will be given.

Hi taberge,

thats why I'm confused, because both of those diagnosis were made by rheumatologists, both of them knew that I was HLA B27 positive.

necessarily mean you have A.S. I am negative for the gene but have the disease. I would suggest that you go back to Dr. #1 who dx'd you and ask him more questions. Don't let anyone take away your dx if you think for certain you have it. This happens a lot and it is awful. Hang in there.

Hi, MarkyT:

mri results are not very reliable, especially in the hands of people with poor diagnostic skills.



If You had persistent pains for greater than three months and meet the Pre-AS qualifications, You DO have AS; most recent rheumy is not Your friend! If You want more information on how to 'nuance' a diagnosis for Yourself, check out the diagnostic section on my "Important AS Resources" dropbox.

But more support for the AS diagnosis is the results of NSD. Understand the statistical significance of the B27 antigen: >90% of people with AS have this whilst it is present in only about 8% of the population; numbers don't lie. The antigen has been improperly discounted lately, but while a negative result does not discount the disease, a positive result--with characteristic symptoms--is nearly absolute.

HEALTH,
John

Bone scan will reveal bone inflammation.
Jay

If you are currently in remission, is there latent damage in your SI joints?
Ignore the 2nd Rheumy and go back to the first if possible. However, if the 2nd is going for Psoriatic arthritis or undifferentiated Spondy instead of AS-don't worry too much as the treatments are the same.

As another HLA B27 negative, I have to jump on the band wagon of symptoms instead of the HLA B27 thing.
HLA-B27 is commonly found in 8% of the Caucasian population. It doesn't even exist in some ethnicities.
Hla-b27 Testing is positive in over 80-90 % of MALE Caucasian AS patients while Female patients, while the majority are positive, they are less likely to be positive than males with the disease. The relationship is less strong in Blacks with only 50% of patients having a positive test.

Native Americans on the other hand: native American populations such as the Haida which have a 50% prevalence of HLA-B27, but is very low in native South American and Bantu populations of Africa who have very low B27 prevalences.

Hi Mark,

Search this site for 'ASAS Handbook' which has the not so newly agreed diagnostic criteria, and make sure the rheumys are aware of it. There are several things that need to be taken into account. MRI and B27+ cannot be the only things looked at.

Good luck on the road to diagnosis. Whether or not you have AS, there is something going on and you need to find out what so you can move forward in your life.

Warm hugs,

One word: flare

If you were in a flare, then weren't in a flare, this could explain it.

Too, as others have said, HLA-B27 can help if positive, but should not rule anything out if negative. I'm negative.

While they only dx'ed me for "spondyloarthropathy", I'm on Humira and it has helped so much.

For me, it wasn't one or two symptoms that gave me the dx, it was the whole package. For me that would be:

• gastritis
• constipation / diarrhea / not digesting my food at times, when I flare
• inflammation and small crohn's like ulcers in the ileum
• flares
• neck problems / nerve compression / bone spurs / flares
• SI joint flares and degenerative changes on a CT scan
• enthesitis (pretty much all over, amazing how many entheses we have)
• asymmetrical joint problems
• psoriasis (which I thought for years was "just dry skin" as my psoriasis isn't my worst symptom)
• mouth sores
• dry eyes
•at my worst,erythema nodosum
•Aleve helps
•methylprednisone helps
•humira helps

I wish a rheumy had asked me about all of these things early on. It was only after I identified spondyloarthropathies that I started putting it all together.

maybe you see some of this that you can use to build your case...