High ANA possible Lupus? HELP!

[italianmom]

Tired of all this I just want a diagnosis. First of all I also have Celiac sprue, another autoimmune-related disorder..and Pseudopellade (sp?)..an autoimmune form of alopecia which is causing my hair to fall out. Neither of those account for my positive ANA (1:1600 solid pattern), constant fatigue, joint and muscle pain, photosensitivity, unexplained fevers (feels like i have a mini 'flu' often), intermittent swollen glands and ive also had a pulmonary embolism...oh im sure theres other things i just cant think of them now. Ive been seeing a rheumatologist but she hasnt given me any definite diagnosis..just keeps telling me to come back in 6 mos. Does this sound like Lupus..or anything else?  Ive had many other blood tests but they have so far come back negative. Ive also had elevated liver enzymes for years..but that has since gotten better after going gluten-free. Im 37 yo and have 3 kids and cant take being exhausted all the time..im not functioning well at all. I just want answers..if anyone has any feedback or can suggest some tests i can ask for that would be appreciated. Thanks.

[Ladybug0209]

My mom has had SLE since 1994 and her symptoms were very much like you described for yourself- fevers very often, muscle/joint pain, hair loss, very tired all the time and short of breath sometimes also. As to pulmonary embolism - that occurs often in patients that have Lupus. The Lupus anticoagulant is an antibody that is present in patients with lupus, and can cause venous thrombosis, pulmonary embolism, and arterial thrombosis, I do not mean to scare you but if you should have Lupus then you do need treatment for it, either Cortisone, Plaquenil or sometimes Both. When my moms Lupus began and was very active - she took Cortisone but that is not so great for you so as soon as she was better the doctor started lowering her dose until finally she was off and on Plaquenil, which is a lot better as to side effects - all you have to do is check your vision yearly.  My suggestion to you is to keep testing yourself with a Rheumatologist and  if you are not happy with your current Rheumatologist then I would definitely find a different one, though the tests should all be the same. Please keep in mind that a lot of people - including myself may have a Positive ANA test and not have Lupus or have it and just not be positive for all the tests yet or not have all the symptoms. Lupus is one of the most difficult diseases to diagnose but if you have all the symptoms you mention then I would definitely get re-tested or tested every 3 to 6 months to be on the safe side. There are other tests that they would do like the:
anti-DNA test,  anti-SM test and an anti-RNP tests.. these are other blood tests. Well, good luck to you and I hope you feel better.  Rosy :)

[italianmom]

Thank you, Morgan..im going to look into it. I appreciate the response.

[jaksmom03]

sorry my email is rmwagoner03 (at) yahoo (dot) com not 02 sorry! but I sent you a private message anyway!

[jaksmom03]

Hi please please listen to me as far fetched as this may sound to you!!!!!! please look into Lyme disease!!!!! YOU SOUND LIKE CLASSIC LYME! im not sure where you live but it doesnt matter lyme is everywhere and lyme gives you a pos ANA aswell. all of your symptoms down to the celiac is lyme. You dont have to remeber being bit I didnt! The flu liek symp is from a co-infection of lyme please google ILADS and read this info DO NOT READ CDC information, if you were tested for lyme and it was neg this doesnt mean anything the tests are not accurate 60% of people that have this test negative! go to youtube and type in lyme disease and watch some videos so you can start to understand this, lyme is often diagnoised as MD, Lupus, ALS, RA, fibromyalgia, chronic fatigue syndrome, or people are told that its in thier head. If I can help you in any wya please email me also  there is a chate room on lymenet we meet at 8pm every night and are there late. please come and get some questions answered. a regular doctor will not treat lyme the more you read you will understand this part of lyme and how its mistreated. You need a test through igenex (google this) its out of pocekt but you ccan get paid back through insurance. worht every penny. my email is rmwagoner02 (at) yahoo(dot)com please email me or come onto chat my name is morgan on there and help you get a doc that can help you!!! you need a LLMD i would bet my life that this is what you have!! I went through struggle please go read symtoms of lyme AND CO INFECTIONS!
good Luck

[italianmom]

Yes, I am seeing a rheumatologist. But still so far no answers,..she just has me treating symptoms and puts me on paiin meds.....  and the 'ol lets wait n see.

[Want to feel well!!!]

Have you been to a rheumatologist?  Lupus is not an easy thing to diagnose by the ANA test results alone.  Positive ANA does not necessarily mean Lupus, but then again it could be.

I understand your need for resolve.  If you have not been to a rheumatologist, you might want to consider it.