Ankylosing Spondylitis FAQ

 

Q: How do you get it? 

A: Be really lucky!   They (medical community at large) don't know exactly why you get A.S.  There was hope that a genetic marker HLA-B27 was the yes or no answer but it is not.  I do not have HLA-B27 and have active disease and many people with HLA-B27 never get sick. 

Q: What test determines if I have AS?

A: There is NOT a single test to tell you if you have AS.  AS is a frustrating diagnosis made by subtracting every other possibility in addition to having elevated CRP levels, ANA and ERP-Sed Rates as well as thickening and/or fusion of your SI joints seen in an x-ray or MRI.  You also have to display several of the hallmark symptoms in order to get an Ankylosing Spondylitis diagnosis.  

Q: What are symptoms of Ankylosing Spondylitis?

A:  Symptoms of Ankylosing Spondylitis are complicated and vary from individual and gender.  Women present very differently than men and therefore have a much harder time being diagnosed correctly.  That being said a diagnosis of AS takes a man 5-10 years from symptoms to diagnosis and for a woman a shocking 15-25 years before the diagnosis is made. 

Hallmarks of AS includes pain in lower back, neck and joints throughout the body.  Asymmetrical swelling and redness in joints is very common. 

Joint stiffness and pain is worst in the morning and late evening.  It can take over an hour for your body to "warm up".  In women hands, shoulders, hips, knees and heels are commonly involved as well. 

Fatigue is a major hindrance and is very consuming.  Even after napping or sleeping in you don't ever feel rested.  While sleeping during the evening sleep is frequently interrupted by joint pain and stiffness.  Most AS warriors go to bed with a fortress of pillows to support their hips and knees.  We also do not use pillows or use very smushed flat pillows to prevent our necks from fusing forward at night.

Q: How do you fight Ankylosing Spondylitis?

A: At the moment for me personally the fight is 90% mental and 10% medical treatments.  I have a whole section dedicated to the medical war I have been waging against Ankylosing Spondylitis and I invite you to take a look.