I have been putting off posting about my appointment because I feel more confused and very frustrated! I was planning on posting today, and now that My sis did...I am going to go ahead and post also! I am really going to try and post without the negativity I am feeling! Please bear with me!
We waited 3 weeks to get to see this doctor and drove 3 1/2 hours to get there....When we got there I was quite impressed with the office. We had heard it was a state-of-the-art facility and we were going to see the founder! We first went to the lab and the gal that drew our blood was excellent....she got the vein on the first try, but it seemed like she was taking a gallon of blood! She told us that we were lucky to be seeing the doctor we were, because he was her doctor and he was very good. Also, that he took the time to explain things. This made me feel even better. Then it was over to x-ray. Another very nice lady. She said she was going to x-ray mt hands and one other place. She asked me what was bothering me the most right then. I told her my lower back, so that was the other place she x-rayed. Then I waited for almost 90 minutes, but felt like this doctor would be worth the wait, according to everyone. When I finally got in, the doctor already had most of my bloodwork and my x-rays. He started the exam...he felt my hands, fingers, wrists, knees and poked around on my neck, shoulders and back. Then he told me that he could not say for sure I had RA. I think my jaw hit the floor. Four weeks ago when the doctor did the RA test... it was a doctor filling in for my PCP because she was on vacation. When I called in for my results, there was a lot of concern in his voice. I was told that test result that were 35-45 were considered high and over 45 were considered extremely high and mine came out 57. He said that he was sure it was RA and because it was so high he was pretty sure there was at least one other autoimmune disease going on along with it. When my PCP came back, she was extremely concerned, also. When I asked him about the high results, he asked me if I had any kind of an immunization recently and when I said no...his answer was "well that can raise the RA results". I told him again that I have not had any and 4 weeks later now, the test came back still a 54 here at your office. He said, in a condescending tone "Well, I have been doing this for a long time and I am just not feeling it in your hands. I need to see you when you are in a flare." I told him that I had been on steroids for 3 weeks and that my joint pain was nothing like when it flared, I hurt and was stiff in the mornings and had occasional twinges but was doing better as far as my joints....but I was hurting EVERYWHERE else and just feeling terrible. That is when he told me, "Well that is probably the Fibro....you tested positive in most of the fibro pressure points." Up until that moment, I did not know I had fibromyalgia. Also, he said that I have disc narrowing at L3-L4, L4-L5 and L5-S1. Before it was only L5-S1....funny thing is since the appointment I have found through my own research that RA in the spine can cause disc narrowing and if it is happening in the cervical spine, which he did not x-ray, it can be fatal! So....now that I have rambled and rambled....sorry about that....the Rheumy is going to go on a 2 week vacation in the middle of August so since he wants to see me in a flare...he put me on a low dose of steroids for another month to keep me out of a flare until he gets back! In the meantime....I told him that I feel terrible and all I do is sleep, but not for long periods because the pain wakes me up... and his answer was that it was a good thing I was currently unemployed, so I can sleep when I need too. And that was it....take the steroids...then wait for a flare....and drive 3 1/2 hours when I am in the flare to see him!! UUUUUUGGGGGHHHHHH!!!!!
Shannon, my sister didn't get any further with what is going on with her either....so here we are in the "House of Pain" just waiting to see what happens next!
Again sorry about the long post and hope you are all having a LPD! Take care of you...all of you!