Hi Sophie and welcome :welcome:
I just had a look at your original post and I think it contains helpful info and not too much of it
so I've decided to copy it here if that's ok 
Lily
I just had a look at your original post and I think it contains helpful info and not too much of it
loveHello my name is Sophie and I have been reading some of the post on this site with tears in my eyes just to know I am not the only one going through what I have been experiencing the last 13 years.
Since I was pregnant with my last child I have had joint pain and swelling, hair loss, severe migraines. Progressing to dry mouth and eyes, Reynauds with sores on my hands. Blood clots, a seizure, meningitis, status migrainus, anemia requiring IV iron more than once, sun sensitivity, lacy rash, insomnia, costochondritis and probably more I have left out. I have had a positive Ro-ss,ANA= 380, positive antiphospholipid antibody, but neg anticardiolipin.Also at other times these tests have come back neg. I have read that this is possible for you to have Lupus and these tests to come back pos and neg at various times. Also that 20 % of all Lupus pt remain sero negative for the ANA. And still they give me a diagnosis of unspecified connective tissue disorder with Sjogrens Syndrome. Now I have been told I have Renal tubular acidosis and must see a nephrologist asap.
Last month my Rheumatologist was not happy with my progress on 200mg of Plaquenil and at one point 20mg predisone, now down to 8mg. He wants to start methotrexate. I have said no to the methotrexate.
I am allergic to aspirin and NSAIDS so he is limited to what drugs he can use.
I am also on disability for severe migraines and have had to quit my job which I miss very much and I am too young to be staying home.
My hematologist has insisted for 3-4 yrs that I have Lupus but since it is not his specialty he cant make the call. My neurologist has maintained that my migraines have nothing to do with the USCTD ( or Lupus). Seeing some of the messages today though makes me realize others are having the same problem.
Supposedly I go to one of the top Dr's in Dallas. I am not sure what to do or if methotrexate is the way to go...any advice?
Thanks,
Sophie
Lily