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

Thanks all, for the great information. I went for the MRIs and found out they were doing cervical & thoracic, so who knows. Maybe he saw enough in the lumbar x-rays. An hour and 15 minutes in the "tube" better find something!
I have written down symptoms that match AS that I've had for the past 5 years so I can take them to the next appointment. (From the sudden loss of 40 lbs 4 years ago, etc...)
We'll see how it goes. Even though the nurse threw me off with the bloodwork thing, I still don't know exactly what they got back and I need to remember that the doctor was the one that said AS to begin with.
I'll keep you guys posted and keep your thoughts coming! I appreciate them all.

My doctor had done the MRI before he ordered the extra x-rays. The bone scan showed up the areas of inflammation. At the time I did not have a raised ESR or CRP or even a positive rheumatoid factor reading. However, I had a low positive ANA, which I had 18 years ago.

When this first started for me, I had a low positive ANA but the lab said it was not significant and that perhaps it was a cross reaction to a virus. Since that time it has been rising and it now has the pattern that matches for both Lupus and Sjogren's Syndrome. Yet, I have neither of these diseases at the present time. I had plantar fasciitis in both feet and I had metatarsalgia in both feet. Try walking in those conditions - ouch!!! I had developed pain in my low back around the area of the sacroiliac joint. My first scan indicated some uptake in the ankles and knees but was inconclusive. My second scan that was done 15 years later indicated that I had generalized arthritis. The lack of inflammatory markers led to the diagnosis of generalized osteoarthritis plus enthesitis. Yet, the AS diagnosis was not considered.

Last year my inflammatory markers changed. The rheumatoid factor became positive for the first time. It has risen in 12 months and is now at 66. My C reative protein came in at 19 and it has been decreasing steadily. These markers are a measure of inflammation and the activity of the disease, and they should not be used to rule out a disease. In my case the lack of markers led to the misdiagnosis of Fibromyalgia.

My pain indicators are not consistent with Fibromyagia and there are no knots in the areas that are usually indicated. Sure I have a sore neck but it is not caused by Fibromyalgia. The underlying arthritis activity has a lot to do with the sore neck.

It could be that they wanted you to have the MRI so that they could see what is happening below the surface. Anyway, the nurse was wrong in her opinion because it is up to the doctor to give you the appropriate information regarding whether or not it is AS.

The one early clue that was overlooked in my own case was the fact that there appeared to be something happening with the sacroiliac joint. This activity was ignored until I got the dx of sacroiliitis and even then I did not get a dx of AS as a result of that comment from the radiologist - that was 5 years prior to getting the diagnosis.

MaggieinOz

No, no, I didn't think the AS was caused by scoliosis by any means. Its just that since I've had scoliosis since a teenager, it seems they wrote off all my pain (and other symptoms as well). I have many other AS related problems. My neck for instance, I have some bony spur pressing on the right side of my spinal cord. I've had the sudden weight loss (3 years ago, 40 lbs in about 3 months), low grade fevers, low back problems, heel problems, muscle pain, Arthritis, etc.
I was just worried that because I came back HLA-B27 negative and showed no inflamation, they would rule out AS. That didn't happen. There has been more findings since that confirm.
Thanks all for your input!

Hey Trish,

you have had a rather weird set of symptoms, and I have had some that were similar when I was a teenager.

Personally, I think that IBD or IBS is more relevant for people who are HLAB27 positive. Whilst I have had IBS in the past, it would be very easy for me to blame poor dietary habits plus a stressful job situation and my own internal responses for the temporary IBS.

The main thing, if you have AS, is to start getting the appropriate level of exercise and do those stretches. They are really good for your body and very necessary if you want to maintain flexibility.

Trish,

Don't give up. I was diagnosed by one doctor and then told another I didn't have it. I suffered for a year on just muscle relaxants, and then for a year with my GP just prescribing pain-killers. My current doctor was very annoyed when I came to him having been diagnosed two years earlier and nothing had been done. I've been on DMARDs and anti-TNFs and NSAIDs since then, but still wonder what damage occured in those two years I should have been receiving better treatment.

Jeff

Jeff,

sorry to hear that you had to suffer for those two years. I know what you mean though, because I was misdiagnosed with Fibromyalgia. The initial medication made me feel absolutely terrible and I refused to stay with the program ;-). I have continued to respond to the NSAIDs such as Orudis and Celebrex and am lucky that I am in the mild category.

I hope that Trish will get a proper diagnosis from her doctors, and really the nurse should mind her own business.

MaggieinOz