AS but no treatment

Hearing your pain!   It is so difficult to persist with the medical system to get a diagnosis and a treatment that truely helps YOU, but you must persist and also keep learining from these websites.  I have HLA negative, normal all blood tests, mild inflammation on MRI, no radiographic damage, educatiing myslef, no gluten, no dairy, and just when I think I am getting somewhere (regular exercise eg swim and stretch or walk etc) its 10 steps backwards in agony.  I have read so much that it is a about managing the pain and the disease, there is no clear FIX.  It's a lot easier to say than do, but try to keep your spirits up and rest too if you can.  And find a good doctor, this is my quest too.  All the best (:-)

Sorry to hear about your pain and frustration.  I was once told by a rheumatologist herself that rheumatology is as much an art as it is a science.  Very comforting huh?  But diagnosis can be a brutally slow process and then after getting a diagnosis you may ultimately see another doctor that questions the first doctor's conclusions.  I have been there too.

?No real advice except to hang in there and make sure you have a rheumatologist who has specific experience with the family of AS diseases.  Some rheumatologists have not dealt with this very much.

?But a couple of other observations.  Don't worry that you don't have radiographic evidence of ankylosing.  Many of us fall into that bag where they cant really be called AS since AS requires that radiographic evidence by definition.  That does not mean you don't have an autoimmune disease which causes pain, stiffness and inflammation of the spine.  But secondly, the classic pattern of AS related pain is that mornings tend to be the worst time.  AS sufferers are worst when just getting up and the pain tends to get better as you move around and get on with your day.  That is obviously not written in stone but seems to be a common pattern.  Finally they tend to add contrast to imaging studies when there are things in the picture which could be confusing.  Scar tissue around old surgeries is one example.  Scar tissue can look like disc tissue so dye is added to make that differentiation.  I dont think it necessarily would make any difference in seeing evidence of ankylosing.  Just my thoughts.  Best of luck to you and keep pushing the doctors for a diagnosis.

Morning stiffness is one of the key symptoms of A.S.

From what I read you don't suffer from morning stiffness as much at night.

Those symptoms don't seem to be positive for A.S.

But there are many different types of arthritis.

I would take Advil/ibuprofen if you are able. 

Thanks. It is really amazing that people started replying me within a day, it boosted my moral support. Thanks everyone. 

My biggest challange is I have visited all 4 rhummy doctors in my city. All of them have same conclusion that I have no AS. 

I think I have AS because: HLA-B27+ and chronic back pain.

Docs says no AS because: No family history, no morning stiffness, Normal MRI, CTScan, ESR always 3 to 10, late sudden onset age i.e. 40.

All doctors have 10 to 22 years experience. I had argument with one doctor but he politely said me shut up and dont come here again. 

What should I do now. No rhummy doctor left in my city now. Other doctors send me to rhummy and rhummy send back me home.

Other challanges:

1. Can't sit or sleep on hard surface

2. Pain starts within 3-4 minutes as soon as I touch my back to bed.

3. Can't lift even 1 kg weight else pains a lot

4. can't bend forward, backward, or any other side. I am straight always.

5. Can't walk fast.

Why SI joint MRI and 3D CT scan were normal last year even when I was not even able to walk 10 feet, was so much painful SI joints?

Shall I start spondilysis medicine my own?

Thanks Friends.

To me, your symptoms are of fibromyalgia.

HLA B27 is a protein found on white blood cells. If an HLA B27 test result is positive, it simply means one has a greater-than-average risk for developing or having certain autoimmune disorders. A positive does not guarantee you have illness...this is fabulous news because I can personally tell you that having autoimmune disease is very difficult The treatment for autoimmune disease can be drastic as in my case. I truly hope you do not have autoimmune disease.

Rheumatologists are proficient in autoimmune disease involving HLA B27 ...

Have you considered NSAIDs that you can purchase without a prescription...just do nit take an NSAID and aspirin concurrently. Or acetaminophen with doses taken no closer than 6 hours apart

Please do not shun these options....I remember when all NSAID medication was available by prescription only.

,kind regards

judith

Hi there Khairnar,

I wonder if you could have fibromyalgia &/or myofascial pain complex...

Research these and see what applies to you.

There is not a one specific test that diagnoses a person with AS or Fibro, but 4-5 persistent symptoms.

With ankylosing Spondyloarthritis. With me, and for what I've experienced and also learnt, that we experience pain on and off and increasing as time passes for about 10 years before it actually shows up on an X-ray.

Mine started in my sacriillolic hip joint. I have only been officially diagnosed in the past few yrs with AS and only 6 months with fibro.

Pain relief, works best for me is Panadol osteo.

You don't need to go without pain relief- my body let's .e know when I should have taken some.

Pain intensifies with physical and mental stress and the brain is so smart that just thought processes triggered by memories, fears and worries make it worse.

Gd luck....