I am a 43 year old female. I started having leg pain about 6 years ago. Had 1st MRI that showed 2 bulging disc, sent to Orthopedic Surgeon. No reason for surgery yet. Went through Physical Therapy & 2 epidurals. No relief. Year later, another MRI. Slipped disc. Time for lumbar fusion after 2 more epidurals. I told my Ortho that my pain was in my SI joints, or more like my pain was in both butt cheeks and ran down both legs to my feet. Not your typical sciatic nerve pain that most people complain about. He said he understood. 6 months after my surgery pain is back! Ortho’s words, “Guess it didn’t work”! Great! And this is after I ended up back in surgery 1 month to the day of original surgery, with staph infection in surgical site. So! 2-3 years later, pain is worse in my legs, butt cheeks and feet. I am miserable. Then I start having joint pain. L hand middle finger knuckle pain that radiates to elbow. So, my Family Dr. does arthritis work up. RA positive, ESR normal, Aldolase high, C-RP normal. Rhemy appt. made. 6 months out! Put on Plaquenil & prednisone, Pain increasing to both elbows, knees, ankles and feet. Then muscle weakness and costochondritis pain. Family dr starts me on MTX because appt so far out. Back and leg pain getting worse. She told me it was the RA that was causing my pain in my back and legs. So I do what everyone is told not to do. I googled the heck out of RA and leg pain. Oh, and I forgot to mention I am a lab and x-ray tech. So I see a lot and know a lot of patients with all kinds of with RA and fibro and all kinds of different arthritis’ but no one had the back & leg pain that I have. Ok so back to my story. I came across RA and back pain link for AS!!! Holy Freaking Crap! My symptoms! Pain in butt cheeks, joint pain, can be brought on by bacterial infection in the gastrointestines ( I had C diff for like 6 months about 6 years ago, how ironic) an infection from antibiotics. Have had diarrhea ever since. And major fatigue! OMG! I have never slept so much in my entire life! I have always worked 2 jobs. And would spend my 1 of my 4 days off a month of work cleaning. Well, not anymore. I spend my weekends sleeping! Ok so now for the HLB 27 test. I ordered it & did it! Guess what?? Positive! Talk about major relief! I am not crazy!! I am not a hypochondriac!! I am not a drug abuser!!
So, I talk to my fam dr., she is relieved for me and tells me how pts get awesome results from Embrel & Humria etc.. So I am excited about going to Rhemy. Get there, 1st thing I find out after waiting 6 months to see him. He doesn’t take my insurance! Well Hell! I have waited too long and hurt too bad to wait another 6 months to get into another dr. So i see him. 2nd he tells me, There is no way I can have both RA and AS. In his 20 yrs he has never had anyone with both. So he tells me to have Anti CCP abs checked and if they are neg, then we will do Mri to see what kind of damage is done to my SI joints. CCP neg, Mri neg!! Holy Hell! Really?? So he calls and takes me off Plaquenil and MTX. Joints are back to hurting worse within 2 weeks. So he puts me back on MTX. Then time for my next appt. He ask how it’s going? Well, not real good. Still hurting. Everyday it’s a new place. Elbows one day, knees the next, elbows and knees the next. Back and legs the next! So, then he says, (get this) It’s probably RA & Spondylitis! ( Really?? duh..) RA must just be neg because of MTX. Good Lawd he is killing me! lol Let’s start embrel. Well, I have an appt with new Rhemy in 3 months that does take my insurance. If I get the dx and meds from him (not being on my ins) my insurance will not recognize dx or meds. So technically I have not been dx yet. But I know it’s what I have. So now the waiting game again. But I feel I am so close! I just hope and pray this new Rhemy knows at least a little more about AS.
Started with new Rhemy July 31st 2014. I love her! She did more test. I have had 3 positive RAs & 3 negative RAs. She says I don’t have RA because all of my inflammation markers are neg. But I have really bad joint pain. Which she said is more evidence of A.S.. So she started my on MTX 10 pills weekly & she increased my predisone to 15 mg dly. Still have a lot of joint pain, back pain and leg pain. She then started me on Humeria. WOO HOO! I am so excited! Sad, I know! But I have such a sense of relief. I have a chance of feeling better. And I actually have been feeling better. UNTIL… I got an abscessed tooth and I am on antibiotics until root canal is done. Which has been about a month now and I have another month to go. I didn’t realize how better I had been feeling until I haven’t been able to take MTX or Humeria. All I want is to feel better again. But I know I will. I just have to be patient and take care of myself. Stress is also a factor in my well being.
I have to consider my health now. I have honestly gotten such a renewed sense of life and this disease from other’s stories. I know I could be a lot worse and I am not giving up! And let me tell you, anyone who complains about back pain or joint pain. I make them demand to be tested! I don’t know of anyone else in my family that has AS, but there are a few who have back problems. I have them told them to get tested.
So I guess you can add me to the list of women with AS! It’s not a man’s disease anymore!
NEW AS WARRIOR!
Tennessee, United States of America