Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases HLA-B27 negative

Thanks tntlamb. I suppose I would fall into the "peripheral" category. I do have lower back/butt pain and my neck crackles when I turn my head, but I also have pain in my knees, wrists, elbows, various fingers, sometimes ankles and sometimes ribs. My rheumy is still refining my diagnosis - she said it's most likely AS, but it's the "female" form, referring to all the peripheral involvement and the fact that my SI joints are still open.

Good morning,

Thank you for the replies. I have had this mess since childhood (8), and it started with waking up in the middle of the night with severe leg pain. As I grew, it began to manifest in other ways; severe morning stiffness, eye inflammation, fatigue, dizzy spells w/fainting, nosebleeds, inflamed glands, etc. I began to hear the term "non-diagnostic" over and over and over, by whichever doctor my parents happened to take me to for each specific symptom. Most often things were attributed to "growing pains", allergies, or that I was making it up. I finally just stopped talking about it and tolerated the pain.

It was finally discovered at age 30 that my sacroiliac joints were fused, and now up to my L5. I have had bad episodes with my hips, knees, and ankles, with severe swelling and very high sed rates. I have arthritis with some fusing in both shoulders, with anamolous ribs where first ribs meet the clavicle, and exotosis in numerous areas. I have had peptic ulcer disease several times, pancreatitis, and an ulcerative colon, all coming back with biopsies saying "non-diagnostic". This inflammatory crud has also affected other internal organs. I work hard, exercise as much as I can, and try to eat right. It is so frustrating to have something that is so widespread in my body, so unpredictable, and also so individualized and misunderstood by the medical community. Sometimes I feel as though there is an attitude out there that says "Well, it's probably not going to kill you, and it's not contagious, so there's no reason to put much effort into finding ways to prevent it." <sigh>

Anyway, I am hla-b27 negative and female. I came to this website several years ago looking for others struggling with this goo, but when I saw how much emphasis there was on cervical fusion and the male factor, I didn't stick around. Now I am happy to see that it is much more inclusive of females and other symptoms.

I think it would be a good thing to use terminology that is more across-the-board and referring to the pain of enthesitis, fusion of the sacroiliac joints, potential for other bone growth and fusion, and the potential for other organ inflammation. These are the things we ALL seem to have in common.

Yep! That's where I'm at too!

Thanks CentralGaGal!

Hla-b27 negative female here too. Diagnosed with spondyloarthropathy. The rheumy said time will tell if the diagnose evolves into PsA or AS (small peripherail joint involvement would suggest PsA, but the nail and skin evidence is not sufficient at the moment).

However, when dealing with GPs in the past when the inflammation occured only in my feet and hands, the negative Hla-b27 test was used as evidence that I can't possibly have a rheumatic condition. Go figure.

sad, but true

I am female, 50 and HLA-B27 negative.

I have suffered with back pain for 25+ years and over the past 10 yrs my GP refused to send me to a Rheumy as I am B27- Luckily for me a Sports Dr looked a bit closer into my problems, did some blood tests which showed a high CRP and referred me.

I have pain in my neck, shoulders, chest, hips, SI joints, most of back, knees, ankles, elbows and 1 toe. The Rheumy said I had SpA on my first visit, subsequent MRI and Xrays confirmed AS.

I can't tolerate the anti-inflammatories and have just started Simponi. I am waiting to feel better.

I am forever greatful to the Sports Dr, for listening and to my Rheumy who believed my story and wanted to help.

It's the second time I've proven my GP wrong (I had a massive Thyroid multi nodule goiter but for years my GP disregarded my questions as the TSH blood test was normal)

Maybe I need to find a new GP.

I sooo know what you mean, ozz. I am 53, and having had this since childhood I can recognize the patterns from previous events.

I also have a fairly new GP, after my last one decided his sports cars and young women were so important that he only wants to work half days three days per week. It was impossible to get appointments or call backs. The one thing I did like about him was that when I did see him, he was very thorough and had no problem referring me for what I needed.

My new GP is still learning about spondylitis, and it frustrates me. I've been having bad hip pain for almost two months, then a sudden severe UTI with high fever (102), but it wasn't in my kidneys. I was nauseated, weak, and almost fainted several times. The fatigue was unbelievable. I also had abdominal pain. After he prescribed three different antibiotics, things finally calmed down, but I still have the hip pain, low grade fever, and this morning my right eye has got that old familiar "here we go again" feeling.

My GP had ordered a CT scan for suspected "chronic appendicitis" (huh?), which came back noting no abnormalities in my colon or appendix, BUT "severe degenerative arthritis in sacroiliac up to L5" (no, really? duh!) When my new GP read the report he said "Well, you do have severe arthritis in your lower spine.". It was probably good that our conversation was over the phone so that he didn't see my face. I said "Uh yeah, I've had it all my life. That is why I brought my records to you from my old rheumatologist in NC.", to which he replied "Well I've never heard of arthritis causing abdominal pain or these other problems." Argh!

Fortunately, I was scheduled for a colonoscopy screening with a new gastroenterologist, and I like him (so far). He can carry on a conversation about spondylitis. When I went for the screening and was running a low-grade temp, we casually discussed that it was from my spondylitis and not having had any nsaids in my system for several days to prepare for the screening. He seems to "get it". I go back to see him in a couple of weeks to discuss my results and options. I have found that many gastroenterologists are knowledgeable about spondylitis, and if I can't get a referral to a rheumatologist, he can hopefully help me with my autoimmune disorder needs.

Another day in the life of spondylitis! ;-) One day at a time.

.

Yes, CentralGaGal, we get used to the "no definitive answers".

I realize that doctors most often become doctors because they want to cure people, and I've come to learn that we frustrate them too, especially the GPs, because so many of our symptoms individually present like something of its own and not related to an autoimmune disease. I imagine that it is concerning for them when they are always thinking about making a wrong diagnosis and the liabilities involved in that. I'm sure that getting to know a new patient and trying to discern that patient's pain threshold and emotional state is a bit tricky. The last time I was in the hospital I was grateful that my sister spoke to the attending physician and told her that I have a very high tolerance for pain, and that if I complain of pain she needs to do something to help me. I think my new GP is just surprised that I don't complain more. We spondys understand that we would have no life if we focus on our pain or what we can't do. Following the positive is what keeps us going. ;-)