Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Diagnosed w/AS and 2 days later, I got a maybe not

Hi all,
Wednesday I was told that there was a 99% chance I've been suffering from AS. Another doctor said the same on Thursday.
I have all the symptoms or have had them at some point during my fight.
Friday afternoon, the nurse called and said my bloodwork is normal and I'm HLAB-27 negative. She says no signs of inflamation, yet I can't put on my wedding ring, I can feel my ankles, elbows & knees are inflamed!
Now they want to do an MRI of my pelvis, lumbar, etc....
I do have moderate scoliosis, one leg is 1 & 1/2cm longer....and I ache and have knots everywhere, swolen joints, etc....
Anyone have a clue as to what they might be looking for now?
They did say I can still have AS, I'd just be in the 7% that doesn't have the HLAB-27 gene marker....
Help! Ugh.

Hi Trish,

I have been diagnosed with AS and I am definitely HLAB27 negative. All this means is that I do not have that particular gene. I believe my AS is due to trauma.

Maggie

Hi Trish,

Sounds as if at least your doctors are open and knowledgable... appears from posts here that some woman when they receive the Negative HLA label, doctors do not even consider they could have AS since "this is a man's disease".

Hopefully you can receive proper diagnosis and treatment.

Wanted to add, you can sometimes receive a false negative with the test... I did in early 20's... but when retested at 26-27 came back positive and since then as well.

Take care,

Tim

Thanks Tim & Maggie....
I guess my doctor is open since he was the one that said he was almost positive I have AS. Mine could be because I've got scoliosis, I've got one leg longer than the other...and when they first found the scoliosis when I was young, there was a "space" at the bottom of my spine, the docs at the Children's Hospital back then said if the space was a hair longer, I would have been diagnosed with spinal bifida.
I was adopted at birth, on my medical info from the agency, it said my mother had Juv. Arthritis and both of her parents as well (didn't say what type) & no available info on dad...
I'm not going to stress out. After all these years of pain, I became aware of AS and I do have a majority of the symptoms. Its something I can relate to.
I have no idea what they are looking for in the MRIs, but we'll see!
Thanks guys for your comments.
trish33@tmail.com

Trish, welcome to KA!

Tim and Maggie have already reassured you ( ) that you could, indeed, have AS. So, I'll just say that I'm glad to hear your docs are pretty well informed. I'll keep my fingers crossed that they continue with this enlightened way of thinking and that you'll be diagnosed firmly sooner rather than later, so as you can start proper treatment.

Hugs,

The HLA-B27 gene is vastly overated.

Also, if you are female, you will not fuse as quickly as a male, it is possible to have the disease process going for decades and not be fused. Females also can have the first worst signs of problems in areas other than the classic area which is the sacroileac (tailbone base) fusing, and the hips and lower spine showing signs of change, instead with females it can be the neck, knees, ankles, or fingers which first have obvious problems, esp. the neck.

I am assuming from your post that the nurse saying you have no sign of inflammation means they tested your blood for markers like C-Reactive proteins and those blood tests came back negative. That is why AS is called a sero-negative arthritis, sero meaning blood and negative meaning negative. If they do a test and you are neg. for rheumatoid factor it's like duh, it's not rheumatoid either. Now if you've got a hot puffy swollen stiff joint, THAT'S inflamation.

They want to see if your tailbone is fused. Even if it is not, it will probably show signs of changes. Remember you can have the disease going on for a long time before you x ray bad enough for a diagnosis, and worst, doctors frequently will, out of ignorance, try to misdiagnose you if you are female and try to pin you with "fibro." If you hear the "F" word, smile sweetly and tell them you don't believe in it and leave, esp. if you have previously gotten confirming x-rays or scans from another source.

Scoliosis (which I have also) is not a "cause" of AS, it just means your spine is curved in one or more places. It may or may not be a sign you have AS.

It is accepted in modern medical theory that AS can be a reactive arthritis, it can be triggered by an infection which subsequently may cease or be cured, but the infection sets off the immune system of the body into attacking certain areas and causing inflammation and subsequent damage. Accidents can exacerbate the pain or damage to an already damaged joint, but it is the immune system which is in overdrive and faulty. The immune system of certain people is more susceptable to being triggered because something in their enviroment clashes with their genetics.

The prenatal aspect is finally being understood to influence the health of the adult because the mother may have been short on folic acid or other nutrients at the very critical and very early part of gestation, (when the spine was first forming) or accidently exposed to a toxin in the enviroment. Combine this with exposure to germs and viruses starting in childhood, and some people are going to get sick but then have subsequent changes in their body chemistry. In some of us this shows up as large joint damage eventually. It's actually going on at a cellular level, unseen, for quite a while.

Wind rider is correct to say that the HLA-B27 gene is vastly overrated.

It was not discovered until the 1970s and until then people with AS were diagnosed as having a form of RA.

I think that what has happened is that there is a subset of people like myself who have the symptoms of AS and who have other factors which are inconclusive for say RA including being positive for the rheumatoid factor.

The modern theory on AS is that one is more likely to have the disease if that person has the HLAB27 gene, except if you are female and then the doctors have a hard time making that particular diagnosis. My view happens to be that the pigeonholing of AS as a man's disease, and then the pigeon holing of the disease as requiring a positive to HLAB27 has meant that some people are wrongly diagnosed.

In my own case, when the real symptoms began - and that includes the plantar fasciitis plus metatarsalgia in both feet, and at the same time - the doctors who examined me were wrong when they diagnosed fibromyalgia. In those early stages I had an x-ray that showed changes in the right sacro-iliac joint yet, these changes were ignored. I was diagnosed as having fibromyalgia. It is strange but my all over pain does not fit the pattern of fibromyalgia and I did not respond to the medication that is prescribed for people with fibromyalgia. I have always responded to the NSAIDs or anti-inflammatory treatments. All the literature on fibromyalgia says that one does not respond to NSAIDs.

I have a positive Rheumatoid Factor, and that means that I do not fit the total criteria for AS. However, my x-rays prove the opposite. This means that the criteria itself is lacking in some way, and that it is too narrow.

MaggieinOz

Trish,

I would ask for some blood work for sed rates, C-reactive protein, ANA, CBC, Chem 14,rheumatoid factor, ANCA,Chem 12, Lupus panel, TSH, Hemoglobin, Hematocrit. Those are several I have been going over in my records from my Rhumatologist.

I am also HLA-B27 negative and have no family history of AS in our family.

It has been quite a mystery trying to figure this out.

I have had gone to the hospital 4 times to have cortisone threaded down thru my back into my SI joints.

Steroid shots in the hips 4 times

Steriod shot in the shoulders 3 times

Steroid shot in left elbow 3 times

Steriod shot in the right elbow 1 time

Steroid shot in both feet 2 times

Steroid shot in the right knee 2 times

Steroid shot in the left knee 1 time

Steroid shot in my heels 2 times each foot

Have had my right knee, left knee and right elbow drained.

My C-Reactive protein has always been high 1.2 1.5 1.2 1.4

My ANA's are like 1:160 1:320 1:320 1:400 1:160 1:400 1:160 1:320

I have had Iritis at least 10/12 times in the last 15 years.

They have done a lupus panel which came back negative.

My Dr. said we will just keep trying until we figure it out.

I hope i have helped or have at least confused you...lol let me know if you need to talk feel free to pm me and i will talk to you more about this.

Keep us updated on what your Dr. says.

Take Care,

Lisa

Lisa,

Lupus is only one possibility when it comes to the ANA reading. Other things include RA, as well as Sjogrens Syndrome. I have the dry eyes, and my mouth is dry overnight, but I do not have the necessary factor in my blood tests to indicate SS for certain. My ANA has been gradually climbing over the past 18 years and the last reading was 1:160 (and the same when it was repeated). Mystery. The same goes for the RF indicator. This can be a false positive if there is too much fats in the blood (guess what my cholesterol readings changed in line with the increase in the RF which is now 66 - I wonder if they have it wrong, that the change in the cholesterol is an indicator of something going wrong in the immune system.)

This means I belong to a small subset of people who are positive for the rheumatoid factor but have AS. The other explanation is that the real diagnosis should be mixed connective tissue disease, which is also an auto-immune disorder but the indicators do not point directly to one disease.

Trish, it is so much harder for women to get an AS diagnosis, and as you can see it is not plain sailing if we do not meet all of the modern criteria. AS is not a man's disease, and yes there can even be mild cases that go undetected. I think that the real problem happens to be with the modern criteria for AS, and that researchers have gone too far in one direction by excluding other subsets of people. AS is supposed to be seronegative yet I am seropositive for the rheumatoid factor. What everyone forgets is that in the old days (prior to the 1970s) AS was known as rheumatoid spondylitis. Hmmm....

MaggieinOz