13 years ago, after a soft bone heel fracture from lifting heavy furniture at age 43, 8 months in a boot cast with a shoulder surgery while on medical leave, I was given continued treatment for psoriatic and rheumatoid arthritis. At that start time, I had a full body scan done because of back, neck and joint pain through my Rheumatologist. with nothing out of the ordination, structurally, just degenerative changes, per doctors. I changed my diet and lost 40 lbs giving me reduced pain and stiffness for more than 12 years.
Until I wasn’t able to do sit ups anymore last year. Three months of extensive physical therapy aggravated whatever I had in November 2012, my face was very swollen. I was given a “bone density” test after the P/T that came back low, with a high risk of fracture. Vitamin D levels checked and very low. All I was given was boneva and 50,000 iu vitamin D by my Rheumatologist. Less than a month, I was forced into a trip to the ER because I couldn’t walk for 5 hours after work. The hospital then did a bone “Cat Scan” in December 2012, and sent me to my Primary doctor. Blood pressure constantly going up and back to normal.
My Primary doctor sent me to a Grand River Orthopedic Center bone specialist, who took one look at the scan, and said I have Ankylosing Spondylitis and to confirm, sent me to get the HLA-B27 gene blood test, which was positive. It hit me hard in the sacroiliac lumbar area starting to fuss, spurs, loss of flexibility, pinching with rib cage by simply swinging a golf club (had to stop golfing), stiffness and pain in back and neck (To rotate neck, I had to somewhat move my shoulders with my head in order to turn left or right, especially driving a car.) Inflammation in the spine (A.S.) most know can literally fuse the spine from the sacrum all the way up into the neck if left untreated over time, so told. It can cause inflammation in the bowels, eyes, even the lungs and heart valves causing breathing difficulty and heart block. My Primary care doctor personally phoned me and said “this is way beyond my expertise” after getting results from the bone doctor. ( Many people do not get diagnosed for years because A.S. is still not well known by medical doctors.) My A.S. was even missed by my Rheumatologist, who added it with the notes of the bone specialist at a follow up visit.
Most doctors usually treat the symptoms caused by A.S., or the mimicking additional diseases like PA / RA types of arthritis. A.S. went from the unknown in early 1970’s, toward medical practices changing to specialized treatments. Even though there was more information on A.S. since the 70’s, doctors today won’t hear you out if you say other area’s are hurting, they just say, “your here for this today, you can make another appointment for that, or for your other area’s of concern. And then, out of embarrassment for asking, it gets lost and forgotten, or you get caught up in multiple doctor visits which is very time consuming to patients looking for answers.
I should have been treated for A.S. 13 years ago, yet thankfully, I was at least treated for autoimmune inflammation during this missed opportunity of time.. Some of the medicine was said to have caused the low bone density, or osteoporosis. I am 56 years young now, and can almost say I have had this in grade school, with asthma symptoms and weakness when trying to run back then. If so, I can look back at the periods of losing weight with less starch and sweets, that puts A.S. into remission, along with medicine. You learn what activates A.S. and what doesn’t, even when you don’t know that it is A.S….
My A.S. preferred treatment is Remicade infusions, in addition, Boneva, that changed to Forteo injections after 5 months. Still sore, but I thank god everyday for finally knowing what this is, and for still being able to work while going through the treatment process. I thought long and hard of whether to share this in faces, and then realized no-one should keep this a secret, family members may have to count on this information one day. And to help with finding more definitive treatments towards a cure someday, like gene therapy. Knowledge is the key. Stories give you some answers. My father died of a major heart block in 1975 after a short term disability. There may be other family members that may be affected now, or in the future. If anyone reading any of the stories, think you have similar symptoms, “” “”push”” “” your doctor to give you a “bone density” test by a Rheumatologist, and at the same time, have them test for the gene HLA-B27, the genetic marker that confirms A.S. with symptoms. Get a Cat Scan, which will show calcified platelets on the walls of spinal bone and narrowing of disk spaces..
Dan Wilson, Mid-Michigan, USA living with and fighting A.S. Determined…
http://www.spondylitis.org/members/17.aspx only article I could find referencing A.S. with Osteoporosis links A.S. to the heart . Scroll down to the “”Expectations (prognosis)”” http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001457/ http://www.youtube.com/watch?v=2s8eueQ4-eM presents in multiple area’s
Michigan, United States of America