This is as much of a rant as a question. My sister is getting sicker & being pushed form pillar to post by various doctors. It is so difficult to watch someone you love go through the trauma of illness, & the stresses of attempting to get a diagnosis, especially when you have been through it yourself & know how it all feels.
But my sister is having a much worse time than me, & her symptoms are developing more rapidly. She has now, on seperate occasions, been diagnosed & then undiagnosed with MCTD & then hodgkins lymphoma. Can you imagine how it feels to be told you have cancer, & then 5 weeks later to be told "oh we got it wrong, so go away & get on with your life." When in fact you are feeling terribly ill.
The latest rheumy has recently given her a provisional diagnosis of Syogrens Syndrome & has prescribed plaquenil. Which seems to be a small step in the right direction. But we both feel there is more to it than this. I would really like her to get a second opinion from a lupus specialist, especially considering my medical history (see my profile) & that we also have a cousin with primary APS. She is like me though, she doesn't like to cause a fuss, & is really too ill at present to push forward.
Please give us your thoughts, as much for support as for any practical help you can suggest. My sister is on this site & she will read it too. I want her to know how much I love her, & how much I want to help in any way I can.