We have had some pretty crazy and amazing revelations recently. I knew my husband has been struggling with more intense back pain. His pain meds would work, but very quickly lose effectiveness and seem to fall short as if he was taking over the counter (OTC) pain relief. OTC pain meds haven’t worked for either of us for quite some time. I just didn’t know it was this bad. I just didn’t know.
We knew he had his bottom SI (sacroiliac) joints fused. We discovered that the previous year when he first started seeing his pain management/back specialist from the MRI that was ordered. He also has osteoarthritis after being t-boned in two car accidents within a few months of each other at 14. The recent revelations?
He has a bulged disc that is pressed up against his spine in his mid back.
He has scoliosis in his upper back – a mild curve.
He does have ankylosing spondylitis in his back.
Ankylosing spondylitis is an autoimmune disease like rheumatoid arthritis, but it is concentrated in your spine. It can affect the extremities such as hands and feet, but it’s primary focus is the spine with the possibility of eventual fusion of all bones into a straight rod and no flexibility like the spine should have. The length of time it takes for complete fusion of a spinal cord will vary according to genetics, how early it is discovered, how aggressive the treatment, and so forth. Right now, my husband has a better chance because detection came so early in the disease and because we have good insurance to help cover treatment as time goes by.
This is a disease that is often missed. It is missed until many more bones are fused. Diagnosis is difficult and there are no definitive tests. At our last visit, neither my husband nor I had elevated sed rates or an increased RA factor. Just by blood work alone it would have been impossible to tell. And, the only reason the doctor looked at it as a possibility was because I asked. She looked at his history, his complaints of pain, and his test results and wanted an MRI. As soon as she got the results she definitively diagnosed him with ankylosing spondylitis. And, it all made so much more sense.
When I was first diagnosed I read everything I could get my hands on about my disease. I looked at articles, checked WebMD, the Mayo Clinic website…..anything and everything. I read so I could understand me and my body. I read so I could be prepared for what was to come. I read so I knew what my medication choices were and so I could figure out what my best path would be. I read so that I could have a sliver of control over what was already a chaotic and scary experience. Without even knowing it, I was reading to protect my husband from what was to come.
So, the diagnosis brings several things to the forefront. I am scared and feeling a bit overwhelmed. I live with him and even I didn’t think so many things could be wrong with him at once. Next, I am relieved. Over the past several years I have fought for him, even when he didn’t want to fight for himself. I pushed and pushed until he was diagnosed with RA. And, I have pushed and pushed until he was finally diagnosed with ankylosing spondylitis. Every time, I know there is something wrong long before he does and I just don’t give up until he gets diagnosed and properly treated.
Finally, I feel optimistic. The amount of pain he had didn’t correlate with what was wrong and with his treatment. Now, we know, and we can adjust and we can work toward a better future with less pain. Now we know where we are going and what we are doing.
There is nothing like knowing someone you love has something wrong and you not only don’t know what is actually wrong, but you also don’t know how to make it better. This additional diagnosis modifies the kind of medicine he can have for treatment and where we go from there.
So, now I am at two autoimmune diseases and counting. (RA and fibro – fibro is counted as one though it isn’t really one at all.)
My husband is at three autoimmune diseases and counting. (RA, fibro, and ankylosing spondylitis)
The statistics say that once you get your first one, you are 50% more likely to get a second one. Once you get that second one, you are 75-90% likelier to get a third one….
Here we go…..