conflicting results and diagnosis

I have been having a multitude of issues since April- a local MD did my labs in which my ANA was positive and my DS DNA AB were 20 ( should be less than 4) The Local rheumatologist who saw me in May ran my labs again- with same results - He said it meant I had Lupus but he didnt feel it was contributing to my issues at that time. Long Story short- I have been in so much pain the last 2 weeks my local MDs sent me to the CITY and after 10 mins the doctor said - I dont think you have Lupus - you dont have the rash.. I think you have dermamyositis/polymyositis- heliotrope on eyelids, gottron papules, vesicular levido(spelled wrng) When he did my labs they were ALL negative, He said he didnt understand , how I could have positive results on 3 different occassions and neg 5 days after the last. He doesnt think his lab is wrong, even though they have only drawn my blood once.. I am at a loss as to what to do - He wants to see me again in a week, but wont dx me or treat me with prednisone.. Any thoughts on this matter? advise would be greatly appreciated.

[ktmom]

HI, I don't know what to tell you but the blood test issues/diagnosis seems like a common event.  I had two labs that showed pos. ana-low complements-slightly elevated cardiolipin-another one that showed positive anti-dna, than another one next month  all together that showed absolutely nothing.  The dr. also said I don't have lupus because no rashes and my ana was neg. last test- but I have been having odd symptoms for a while.  I recently was in the hospital because of severe migraine, could not keep anything down and irregular EKG-which fortunatley was followed by normal EKG-Chest X-ray, they said my lymphocytes were also low but not to be concerned with it-  but I think we all know when are bodies are not working right.  , what I have learned from this community is that blood tests go up and down and it is VERY hard to diagnosis lupus.  I would just say if your dr. is not listening to you and you really feel something is wrong get another opinion.  I just finally went to my neurologist last night who finally listened to me and explained everything to me-I felt such a relief.  Even if they don't figure it out it is so important to find a dr. who will look at all your symptoms/blood tests and figure out some sort of plan.  Best of luck to you.

[karajo]

It is very frustrating when you have labs tht are off and then they are neg.  I think Lupus can make a person look like they are making things up.  But ktmom is right, your labs can be off one day and neg the next.  

Be sure and spend time in the sun prior to your next visit.  This will not only bring out a rash, but will cause your ANA to be elvated.  Just about 20 min prior to going in to see your dr.  They can also do a lupus-band test on the "rash" that your dr. thinks is something else.

[mymothersdaughter1973]

Thanks - I appreciate the input. I went back to my pcp and we redid the labs and had them sent to different facilities- And they were again positive - it is very frustrating.  I have 3 children under the age of 6 and just want to be able to take care of them - especially when these symptoms are really bad. I work full time and dont hae alot of help- I basically told the rhuem/immun that I alls I wanted - was to know how to manage my sxs so I never end up where I was 3 weeks ago..

[karajo]

what was you ANA level and pattern?