Hey everyone,
I had my Rheumatology appointment yesterday with my new doctor. He reviewed all of my records from Ochsner and all of my labs. He proceeded to do a test where he put two pen marks on my back and had me bend over. Upon completing this test and the physical exam, he began to question my diagnosis.
Let me take a few steps back here:
I was diagnosed June 2010 with Ankylosing Spondylitis and began Mtx and others immediately. In December 2010, after plenty of time for the Mtx to work, my dr agreed to try to the next step in treatment since the methotrexate wasnt working in the slightest. I began Humira injections every other week. In April 2011, I explained to her that the Humira seemed to help the energy a little, but nothing noticibly different with the pain. It was almost like I had plateau'd. My next appointment was early May 2011 and she was no longer there. Apparently she is working on starting a new practice and was let go because it was a conflict of interest to work for Ochsner and work on opening a new office at the same time. This happened very suddenly and a collegue of her's picked up my case until I either chose to stay with Ochsner or found a new doctor. I saw her collegue who changed my diagnosis to AS with an RA varient. He took me of the MTX and changed the Humira to every week instead of every other. I continued this treatment until yesterday's appointment. It was not working any different than the every other week was or the mtx was or no medication at all.
So the new dr began to question my diagnosis, because not only should it be helping by now, but I should be able to be off of the prednisone by now. He proceeded to explain that my RA factor was negative and all other bloodwork was normal....always. This means that even during a flare, my sed rate was always 0 and my crp was also normal. So we took a few steps back and realized that my xrays show no proof of AS either. Basically at this point, we have no proof of any sort that this is AS other than clinical symptoms fitting. He is running more test to confirm or deny this. New xrays to see for himself and HLA-B27 test, which for some reason was never even ran on me. I was told that this was the diagnosis and that the xrays dont show proof for many years into the disease, but my diagnosis was based on having the HLA-B27 gene. None of my records ever show this test was ran. I am at a loss here. He continued that with AS at my supposed stage, after the morning stiffness lets up, I shouldnt be experiencing as much pain as I do. He is thinking Fibromyalgia. He said the clinical symptoms fit that too as well as a few other things. Fibro is genetic and my mom has it. No one in my family has RA or AS. My grandmother had Lupus. I really like the fact that he is trying to make sure he has no ground to stand on to prove that this is AS before looking at Fibro. Fibro fits too. I have read the symptoms. I thought it was more of a nerve disorder. I am not understanding that your nerves arent always the most effected. In my case, if this is right, it seems to be more muscular and joint, unless I am thinking it is joint but it is really the muscles hurting.
Bottom line is: I am relieved that Im not crazy that this medicine that drained my darn savings account wasnt even working. Maybe I was treating the wrong thing. One way to find out is if there is no proof of AS, then change the treatment to Fibro and see if that treatment helps, since there is no definative way to prove one or the other. If it helps, then we may be barking the right tree.
Sorry this post is so long. I am confused and definately open to thoughts and comments.
Thank you.