Just had first rheumy visit

[Wal]

The first thing the rheumy said to me after I've waited over a month to see him was "you look well." Of course today my symptoms are mild and even my psoriasis plaques were clear. They are hardly ever clear! I'm grateful to be having a good day though minus TMJ and neck pain. I discussed my symptoms and sudden onset. He saw that all my blood work was negative. He told me that 90% of SS patients have positive bloodwork somewhere of autoimmune. I told him about the crazy joint paint I had for a month last year that went away. He didn't seem too impressed since I was displaying no symptoms. He said he seriously does not think I have SS as I have no swollen glands and I didn't look that bad in my mouth etc. He had no desire to order a lip biopsy as he said a confirmation wouldn't change treatment. He said Salagen etc is not necessary at this point. He also said typical SS patients symptoms do not wax and wane like mine but are bad and constant all the time (even though I told him I do have some mild symptoms always). Anyways, he was very nice but there was this I don't want to deal with you air about him because I looked so well. I asked him about diet changes and he said no diet. He seriously did not want anything to keep up with on me. When I asked what was causing my symptoms he shrugged smirked and shook his head😐 He said he would keep my file open if anything changes but honestly if things progress I will not see him again. I've come to the point that I'm seeing only women. Men think I'm crazy and that makes my blood boil.

[cccourt1942]

First of all the good news about this doc: He is keeping your file open.  Really, I see that as he is giving you some benefit of HIS doubt.

Also...the symptoms MUST wax and wane as so many of us have reported (all anecdotal I know) how we went for decades with "outbreaks" of the symptoms which eventually coalesced AND became chronic. Some took years; some took decades.

Also...I felt great when I saw my first rheumy.  I had finished a Medrol pack about 6 days before I went in.  His MAIN question to me was "do you have trouble talking?"  Well, I am a speech therapist.  In my line of work there is articulation and language.  I thought he was referring to word call and language usage.  I said "No."  Because I had a five year history of sialadenitis he said he'd go on and do my blood work.  I quickly told him I'd completed a Medrol pack within the week...and he said it made no difference.  Needless to say, not only was I positive in ANA, ro (SS-A) and la (SS-B).  Highest "score" at the labs doing the testing.  He called himself to apologize for telling me he thought I had sicca symptoms. 

I don't recall your age, but make sure you recall he will have your file open.  This will indicate he'll see you again whether he remembers you or not. 

I'm not going to tell you how long I had symptoms before they manifested themselves into a chronic state (and when ALL of them were present at the same time.)  The only difference is I had zero idea the symptoms went together nor that there was a name for what was happening. (LONG before computers.)  I have read story after story describing the same outcome as I have had.  We don't always have the same symptomatologies, but the coming and going. 

I wish you some comfort with OTC remedies.
Sjoldier c3

[Wal]

Thanks for the feedback. I do have chronic symptoms daily. They just wax and wane in intensity but he didn't care for now. Oh well!