I am a 48 year old female who has all the pain and symptoms of Anklosing Spondylitis including the gene disorder HLA-B27. My illness started a little over a year ago with some joint problems in my hands. This quickly subsided BUT the problems moved to my buttocks, back, hip and neck. I am now walking with a marked limp and have trouble moving and the pain is never-ending. The question I have is this... my doctors have not given me a diagnosis and claim that I do not fit the disease criteria of A.S. due to my age. The Doctor's I have seen then seem to question my pain, and seem to discount it for I cannot prove my illness with the normal joint problems. Is age a standard criteria when diagnosising Ankylosing Spondylitis?
There are other conditions associated with that genetic marker that can cause similar pain. Still, that does not mean you do not have AS. Some doctors will tell you it's not AS if you are female! Drives us crazy. Usually, AS starts before 30, but there are always exceptions to every rule and there is the possibility that things you ignored or thought were normal were actually early symptoms of the condition.
Did your doc take an excrutiatingly thorough medical history? So called growing pains can actually be a symptom. Females who have AS like symptoms often have a tough time finding a doctor who will say it is AS. You may get diagnosed with Undifferentiated Spondylotharapy. I know cause I did.
Hang in there and keep pursuing it. Change docs if you need to do so. Also, the spondylitis association has a fabulous website with a forum category dedicated to patients recommending doctors to other patients. You will also find lots of info on the spondys - the family of conditions related to that genetic marker.
I became ill when I was 24, pain and chronic fatigue so bad that I lost my job cause I just could not get out of bed. I worked in Customer Service and at the time I was completely under a lot of stress...I was diagnosed with FMS and Lyme Disease...For about a year I was treated for Lyme with Doxy but that was not working so I went to see a Doctor in upstate NY who was THE BEST!! She got me IV Rociphen and within 8 weeks I was doing better..Here is the kicker...In the meantime my x-ray of hips showed small wells which the rheumatologist, at that time, said oh no thats normal...NOT ... I did research and fit the profile for AS...I saw 36 doctors in 7 years and all said I was not symptamatic - I knew I had AS...My radiologist, 7 years earlier was so concerned he did a biopsy which was not conclusive - I was told I had bone cancer and so forth...I gave up and said NO MORE - My family Doctor kept the Mri's going and finally the radiologist at that time called me and asked what rheumatologist I was seeing, I told him I GAVE UP...He said I had the body of an 87 year old and I had to find a Doctor...So I saw yet another Doctor but vowed not to speak a word,...She asked what was wrong and I just handed her my latest MRI (4 years ago) and she said "You have AS, noone saw this"...I cant tell you how relieved I was that she gave me the answer and now I have a Doctor..The bottom line is sometimes you can have the disease for years with NO symptoms and then stress sets it off...Just because you are not symptamatic of something does not mean thats not what it is...I saw the best of the best and they were so confused over this that some just dropped me and never called me back...It was very hurtful as I was/am in so much pain and noone cared...I stay active, move all day and stay away from pain meds ...I do not lie around as this makes the pain worse and if you just sit around with AS you can fuse much quicker.. So dont give up- although it may be FMS, Lyme Disease, RA, just keep checking and dont let any Doctor tell you, you are not symptamatic...I hate that word,.,.as a woman Doctors use it a lot...were young and maybe look healthy on the outside but who are they to say this...please keep me updated as I am very curious what you do...Do your own research and if you have a good family doctor get Mri's, ct scans, and even a brain scan can show other types of diseases....If its AS something should be seen on mri -
Good luck - best of luck
ps...NOONE in my family has AS - I do have an identical twin sister with Lupus...and even that does not run in my family - she went through the same ****..Sometimes you need to leave your state to find a good doctor willing to "listen"
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