"Some Auto Immune Disorder"

This is my diagnosis. I have an elevated ANA for almost 3 years now, been to a Rheumatologist twice, each time he tells me I am negative for Rheumatoid Arthritis ( I do have arthritis) and Im negative for Systemic Lupus but I "have some auto immune disorder"... I take Mobic 15 mg a day (having my RNY in the morning so not sure when I can take it again, if ever). The Mobic is a big help! I can live a normal life with it, without it for the past 2 weeks getting ready for surjury I can barely move... When I pressed for a diagnosis of some sort, all my rheumy would say "just be more worried about getting breast cancer than worrying about this"...I couldnt believe my ears, was he telling me I might have some kind of cancer and this is why my ANA stays HIGH??? ...I haven't been back to him, in fact he is no longer at the Rheumatology Associates offices so I think before I go back to work I will have another Rheumy check me out and see if I can get a definite diagnosis from someone. With all this pre op stuff for my RNY no signs of cancer were found anywhere in my body so this just has me puzzled and I want a definite diagnosis... Thanks for listening! Angel Hugs, Sandy

boy... what a jerk! I think he was trying to say your chances are higher of getting breast cancer???? Anyway, good luck with surgery..... it took me almost 4yrs to get a diagnosis once they determined I had some sort of autoimmune disorder... and that was only because I went into a major flare following the birth of my son. Lupus is very hard to diagnose definitively. Let us know how you do post-op B

Thanks B! I will keep in touch. I am just puzzled by all this. I lost a sister to breast cancer when she was 36 so this may be what he was alluding to with his cancer remark, STILL... Id like to know what I have, so Im hanging tight and playing it by ear to see what transpires. Thanks again! Sandy

Definatley need a new doc..How frustrating!!! If you have a positive ANA then you have lupus...Its amazing howmany docs dont have a clue!! What is your ANA titer?? How about kidneys liver all normal ??? Keep us posted the surgery hopefully will bring you some relief!! erin

Thanks Erin! My last ANA was over 350,000 IF I am remembering it correctly. ALL have been high and ALL have said "suggested of systemic lupus" but my Rheumy said I was a "false positive" and I would always be a false positive. I know he did test specifcally for lupus and it did come back negative at that time. I am going to go see his partner. My Rheumy has since left his practice and his partner has kept it going so I may go see him. Sandy

Hi Sandy, a high ANA usually means lupus. Before my diagnosis my Rheumy just called it mixed connective tissue disease because he couldn't pin point which auto-immune disease I had. Later lupus was confirmed. Madame Yess

TY Madam Yess! I have decided I am going to call and be seen again by my Rheumys partner. My Rheumy has since left his practice. I know something is defintely going on, just dont know what but after 3 years of no diagnosis I am getting fed up with these specialists. Sandy

Hi Sandy, I know you posted a while back but I thought I'd answer anyway. There are several auto-immune diseases besides Lupus. I have Scleroderma (systemic sclerosis). It took 2 years for a final diagnosis. A high ANA doesn't always mean Lupus - as in my case. There are also "undifferentiated connective tissue diseases" which have symptoms overlapping- perhaps Lupus and RA. A good rheumatologist won't give up or make the kind of remarks yours did. Johns Hopkins Hospital in Balto. has a connective tissue disease center. They do great amounts of research on all the auto-immune diseases. Don't give up! My cardiologist swore I had Lupus but he was wrong. Rheumatologists are known as puzzle solvers. Find a new doctor and keep going. I know that once I had a diagnosis, I felt relieved, even if it is incurable. Take care. Cheryl

Hi Cheryl - I also have Scleroderma and was a patient at Johns Hopkins.  Have localized form of Scleroderma (Morphea).  Have you had WLS?  I'm not crazy about getting Gastric Bypass and am really hoping I'll be a candidate for the Lap Band even though Scleroderma  is conrta-indicated for the Band.  But I was diagnosed over 12 years ago and have have ZERO symtoms since.  I even had a skin graft 3 years ago without any complications.  Obviously the scarring remains but I'm not on any meds at all.   Any would love to hear about your experiences. Thanks, Anne

I stumbled to this board by chance...nice to meet everyone. I was Dx two years ago ...and yes it dose take a long time for doctors to pinpoint the disease it wasnt until I had a Major flare up that my lupus was DX.. I think what the Rheumey was trying to say is that as far as chronic illness go lupus is very treatable and fatalities from the disease are rare Prior to wls I was on celebrex for my arthrits but now I just take plaquneil and tylenol arthtritis formula and Tramedol for when I am having my severe pain days. As soon as you hit your six week mark make sure you see the Rheumatologist to get back on track with your pain meds