long term sufferer no real diagnosis

  I"m sorry to hear about your suffering.  Please do yourself a favor and find a good rheumatologist and get on a decent anti-inflammatory and/or pain medication.  They can help.  I have been on hydrocodone for the pain for a few years now and while there is a lot of concern about hydrocodone the fact is that it does help with the pain.  Also there are very good biologic medications out there like symponi or remicade which can also help greatly although they are very expensive.  

  Also, I have made these comments on this forum before so please forgive me for being redundant but I think this is a very important point.  AS is really part of a family of inflammatory processes.  By definition AS requires some evidence of fusing in X-RAY or MRI.  However, the debate has gone on for years about what do you do with someone who has all the symptoms of AS but does not yet show evidence in these imaging studies.  They now refer to people in this category as having axial spondyloarthropathy or axial spondyloarthritis or some similar name.but it is AS without the x-ray evidence of fusing.  I fit in this category.  I am HLA-B27 positive.  I have had severe pain in the lumbar spine and SI joints for years.  The pain is worst in the morning when I wake up and gets somewhat better as the day goes on.  I have a family history of the similar spinal problems (mother and both siblings are severely impaired) and I have related problems with connective tissue in my aorta and aortic valves.  But I too was told that I probably had AS but it wasnt 100% sure because of no x-ray evidence.  What I found was that you have to find a rheumatologist that has worked considerably with the family of AS symptoms.  Otherwise the fact that you don't have x-ray evidence of fusing can throw off even a rheumatologist.  

  So please; find a GOOD rheumatologist experienced in AS; get on some good medicine and don't be afraid to get good pain meds too.  Theres nothing glorious or manly or tough about living in high levels of chronic pain.  In a perfect world you would stay away from some of these medications but if you have these symptoms you've long since left that perfect world.  

  Chronic inflammation in the body does have an effect on connective tissue but I've never heard of anything like that. So I would say it's doubtful that there is any connection to AS  but that is just my opinion for what its worth.  Best wishes in your recovery.  

   The use of any and all Biologic medicines usually have side effects, and many times very bad effects, such as ulcers, stomach problems, kidney damage, liver disease, heart problems, and once you have any of these health issues, you have to stop taking the medications entirely, and still have the organ damage. Then what do you do? I take anti inflammatory medicine only whenn I can no longer stand it, and then just enough for the shortest period of time. Pain killers will only produce addiction, and then you will deal with those problems, and still have AS.

   Also, ligaments, and tendons can ankylose just like joints.

  Not much good news with this disease, AND I sound very negative, but information is essential to making good choices.

Medicines come with side effects and with all medicines you weigh the pros vs. the cons and make your choice.  Greg is correct that doctors must monitor your liver functionality among other things when you are taking the biologics.  But the results can be dramatic.

My wife was diagnosed with rheumatoid arthritis years before I ever saw a rheumatologist for my problems.  At the time the primary weapon of choice was prednisone which is a miserable drug for long term usage.  She was wheel chair bound and had two artificial knees and and artificial shoulder put in.  To say that she was miserable was a massive understatement.  She was put on remicade about 13 years ago and has remained on that drug ever since.   Her RA is essentially in remission and she believes that remicade and the rheumatologist that gave it to her saved her life.  She does periodic blood work to monitor liver function but she is happy and as healthy as anyone with a chronic autoimmune disease can be.  To this day she would do it again in a heartbeat.

Obviously not everyone gets dramatic results like that.  I tried Remicade for my condition and got an allergic reaction to it so no magic.  But the point is that if your life is so miserable that there is no joy left in your life then are you going to say that that is better than trying a drug that can work wonders for you?

Some of the things you say, tendinitis, bone spurs and middle back pain in particular, make me think of DISH, it's a rare form of osteoarthritis that causes calcification of ligaments and tendons, and bone spurs, which can appear anywhere in the body.

It's worth looking into it, but bear in mind that a lot of the information out there is incorrect, when they say it doesn't cause pain, because it can be a very painful condition, and althoug more common in older people it can start at a younger age.

There is facebook forum and several people have a dual diagnoses of AS and DISH, so if you want to find out more and maybe just rule it out, there will be someone who can help.

However if this what you have, there is no cure or even therapy, only pain relief, and general attitude is very dismissive (it's classed as a form osteoarthritis and an old people's disease), so a diagnosis won't be of much help.