I'm going to see a rheumatologist tomorrow, and I'm so freaking nervous for some reason! My previous neurosurgeon felt that I may have ankylosing spondylitis, which is an autoimmune disease affecting the spine, joints, and other organs. For the last several years, I've had many symptoms which seem to fit the diagnosis, from joint pain to low grade fevers to elevated sed rate to sciatica with a normal lumbar MRI, etc. I guess there is a blood test they can do, and if it comes back positive, it is more likely that you have the disease. I've seen this rheumy once before, about 7 or 8 years ago, and I was diagnosed with fibro. However, as the years went by I just learned to live with the pain and other random symptoms.
When I injured my back in October of last year and had the t-spine MRI, I saw a NS who recommended surgery. Prior to mentioning the surgery, he said that I had a lot of herniations in my t-spine, which is not common especially at my age. He went on to say that multiple t-spine herniations sometimes points to AS. Well, after doing some reading about AS, all of a sudden it all came together and made perfect sense. I don't want to get my hopes up that I may finally have an answer, but at the same time it would be great to finally have an answer and to know that there IS treatment. When I mentioned all of this to my current NS, the one who performed my surgery in July, he basically brushed it off because I don't have spinal fusion. Well, after reading more about it, it seems that spinal fusion is often a later symptom, as the disease progresses. In any case, my NS said that it's possible I have it, but there is no point in testing for it because it can't be treated anyway, which is a bunch of BS. If I weren't having issues with another disc and facing the possibility of another surgery, I'd probably not go back to him for just dismissing it like that.
So anyway, I've taken things into my own hands, since I've found it's important to be proactive in your own care, and I have my rheumy appt tomorrow. I should mention that I went to a different rheumy about 2.5 years ago, hoping to have some answers. This time a new rheumy did the tender point test and said she didn't feel I have fibro because I didn't test positive via the tender point test. She sent me off with a script for antidepressants, and I never went back.
So once again I'm going back to my old rheumy, who I really loved in the past, and I'm praying for answers. My appt is at 11:15 tomorrow morning, so I'll keep you all posted.
I do have a question, though. I was in the hospital about a month ago for suspected infection of my incision, but it turned out it wasn't infected. However, when I was in the hospital they drew blood for a sed rate and c-reactive protein. Well, the first day my sed rate was normal...it was 20 with a reference range of 0-25. The next day it went up and it was 40. As for my CRP, the first day it was 98.9, normal being less than 7.4. They did the high sensitivity CRP, if that makes a difference. The next day it had come down to 56.1, but it was still quite high. In any case, when I was talking with my NS about it, he said it was normal for these tests to be elevated after surgery. However, when I had the blood drawn I was about 5.5 weeks out from the surgery. From everything I've read, they should generally return to normal within 1 to 2 weeks. Why does any of this matter, you may ask? Because some people with AS have elevated ESR and CRP levels. So I'm trying to figure out if my levels were, in fact, still elevated due to the surgery, or if something else was possibly going on? I should also mention that I had been running a low-grade fever the day before these levels were drawn.