Re: Primary autoimmune ? Secondary Sjogren's??
Well more confused than ever but not going to freak out! So yesterday I had to go to PCP and review bloodwork Rheumy ran and request tests Rheumy wants to rule out any heart/lung involvement. I am actually ok with this because I do have slight mitral valve leakage and lately I have been complaining of shortness of breath but old PCP told me it was anxiety. So I will have a chest xray, echocardiagram and I had lung function test with fair results.
PCP seems more concernd about posite ANA and pattern than Rheumy. She is also concerned that my white blood count it is now low. I also discussed with her something that was in the back of my head for a while now. When I went to the ENT it was for the enlarged salivary gland and some pressure that I was feeling on the front of my throat that I thought was affecting my swallowing. I felt like my swallowing was kind of lopsided. The ENT told me that the pressure and the swallowing were most likely not connected which I found odd because they seemed to arrive at roughly the same time. He told me that my reflux was the cause of the pressure because that was causing inflamation of the larynx. He also told me that I was not on high enough dose of omeprazole, that I was not taking it correctly and that it is not uncommon to become unaware of the reflux because of scarring or it was while sleeping. I really didn't think he was correct but last week I did start taking two pills per day as he suggested and I did see an improvement in the pressure, it's almost gone but swallowing issue still there. So he was correct. So now I am wondering if when he told me that the Sjogren's was secondary and there was an undiagnosed "primary" maybe he saw something obvious that he did not mention. I have read that quite a few of these autoimmune things can cause a problem with the esophagus so I guess an ENT sees alot of autoimmune conditions. I have also read that some times the primary condition will mask the results of the SSA/SSB and it will show negative. So maybe he really knows his stuff. The PCP has alot of confidence in him, more than she has in the Rheumy. Maybe this is because the PCP and ENT are from the same teaching hospital. As this unfolds I may inquire about a second opinion from the Rheumies at the teaching hospital. I know the wait t see them is a few months but it may be worth it. I guess we will see what happens with the next round of tests.
Sorry for the rambling, but I know that if you have been at this a while, you must have read an enormous amount of material as well as having a wealth of personal knowlege so thanks for looking in on my situation, I really appreciate it!