Originally Posted by NBY
I know this sounds absolutely crazy, but I hope it is Lupus and not Lymphoma(for hoping that it's anything); I am past the stage of hoping its nothing though, because we (doctor's and family) know it's something. I am just going crazy waiting for test results. The doctor's office called me today and I missed the call in regards to my CT I had yesterday morning, ironic isn't it; as worried as I am (it's Sunday). The good news is that they said to call them in the morning, I guess if it was really bad they would have directed me to the hospital. Anyway, I will let everyone know good or bad.
About 7 years ago, a doctor thought I had lupus, but I didn't present with a butterfly rash on my face, so it was ruled out, but who knows??? if I have learned anything through this process it is that nobody's body is the same. For example, on person could have this response to a syndrome/disease and someone elses could have another response.
I agree; Sjogrens does seem to have many different additional symptoms that so differ from one person to the next. Also, I am seeing that it takes forever to get diagnosed; since it does present in some so slowly and over time. The "hallmark symptoms are dry eyes and dry mouth."
I hope you have a really great doctor and they take time listening and are understanding.
The Rheumotologist that I went to; on the first visti ordered blood work and his statement was "I think you may have secondary ss, but you don't look like you have ss." That was when I first started to not like him. Becuase what I should have said was, "really, do you rely on a look? becuase I don't look like Grave's Disease eather and I've lived with that for 12 years, a-- hole"
My second visit, was told that my blood work was only slight elevated which may mean nothing. Doc seemed to be wanting to dismiss me, so I thought I'd get a note for work and get out of there. But I seemed to **** him off when I asked for a note for work that stated; "must be allowed water at all time due to medical condition." He didn't understand why I need this; even after I told him that my work area was being threatened with write up for drinks in work area. Then when I mentioned fatigue he told me that was not a symptom and that it was too vague and accross the board. That was when I shut my mouth while thinking in my head this guys nuts and I won't be coming back. I left with the note and the two month return appointment knowing that I will go to someone else. I did ask for lip biopsy to be done at ENT dept, even though this doc said that that it could come back possitive and still not indicate ss, but be due to menopause. He never asked if there were any changes during the past month since I had seen him. But he did say that maybe my fatigue could be depression or anxiety; What a NUT!
Anyway, last night started a new symptom which is discouraging: stiff, slightly swollen and painful knee
It's no wonder the average diagnosis takes 6.5 years according to ss foundation.