I am stymied… I had to get a new rheumatologist (Harvard and Yale educated) for my lupus because I moved two hours from my former doctor of four years. I went to a new one very highly recommended by a dear, very intelligent friend who is a doctor.
When I went to see him he had all my records, which he read, but said he wanted to do his own work up ”to see if you even have lupus”. This meant a blood draw of 12 vials and a referral to a neurologist and pulmonologist. I was to call him after the blood work came in.
I called in yesterday for the results. The nurse checked w/him on the blood work and the reply was that the only thing of concern was my cholesterol which is off the charts and to speak to my primary about medication.
So that was IT..like the discussion was over..so i said…well, what about the lupus and a treatment plan for it and the prednisone, meds, etc?
So she went off for quite some time to ask him and came back and said ”the dr. said there were very minor changes and that you have very mild lupus, if that.” So I said well what about all this pain? And she replied, “Well I don’t know but that’s very good news. You know I think he just doesn’t want to say you don’t have it outright yet at this point. He wants you to decrease your prednisone from 15 mg to 10.” Then he wants me to come in and discuss things once I see the neurologist and the pulmonologist!!!!
I know I should be happy but.. then what IS all this weakness and pain and flares when I get an infection???????????? And what caused my stroke if I have a mild case of lupus?
I read my previous doctor’s records which indicated I was an atypical case and had not responded to lupus medications. We had always discussed this fact. But he had never said what I found in the record, this hypothesis that it was possibly somatization – that DREAD word meaning psychologically based symptoms- but that he rejected that because of the history of stroke.
So now I’m afraid I have the “hysterical woman” label even though I have these terrible symptoms and history…. Or, maybe I have something else even worse…
Your objective thoughts.. please?