Positive ANA / Negative ENA still autoimmune?

Anyone here ever have this happen while they were sorting our their diagnosis? I have had two positive ANA tests in the last two years, the most recent had a titer of 1:160 with two patterns, speckled and homogeneous. I just received my results from the ENA panel and it all came back negative. Does this mean that I do not have an autoimmune disorder? I have been so sick, I just don't understand what this means...the doctor still believes that there is an autoimmune issue happening. My next step is a colonoscopy, hurray!

Are there any other tests I could suggest to the doctors?

[OriginalCin]

I'm in the same boat, apparently. Higher titer of 1:640 twice and one 1:320 in between over the course of two years. Most recent had what was apparently a totally normal ENA panel, so...I've been told "eh, looks normal". Now what, right?
Please keep us posted! This "game" is soooo frustrating! Do not pass go, but let's collect your 200 dollars!

[karajo]

I too had a postive ANA and neg ENA.  They are supposed to take the 11 criteria of  lupus to dx someone.  It does get sooo very frustrating.  It wan't until I spent time in the sun prior to my ANA being checked that they took note.... 1:2,560 ANA homogeneous pattern.

[oona]

Wow, Karajo. That's a really high titer. Mine is not close to that high. I have two patterns, speckled and homogenous with a titer of 1:160, but I feel horrible and have been sick off and on for four years (mostly on). Since September it's been really bad.  Not spending anytime in the sun, though :)

So far, there are not many things that come back as alarming to the doctors, anyway. Just the ANA, CBC slightly out of normal range, tachycardia and something in my liver (which they think is now a probable fatty infiltration and not a hemangioma). That's what the doctor's are finding, anyway.

I have an MRI coming up soon. Waiting on a date.  

[karajo]

Honestly, I've not seen too many ANAs that high.  It has jumped all over the place.  The last one the dr. did was neg.  He mentioned that he thought  might not have lupus after all.  I thought....get real mister.  A medical advisor from the lupus foundation told me there is nothing else but lupus that can cause an ANA reading that high and a neg. reading is meaningless.  For unknow reasons ANA levels can flucuate and do not reflect disease activity.  

Keep us posted.  Praying for you.

[Lovemygirls2]

I have had two positive ANAs with two different doctors.  Both doctors were wishy washy about a diagnosis.  I went to a third doctor who ordered an ANA test, but he told me that the ANA was a very unreliable test.  He told me that he bases a diagnosis more on symptoms and whether or not a twelve day dose of pregnisone would make me feel better.  He said that was more proof to him than a positive ANA.  Well- I got the call today and the third ANA was negative.  But......the pregnisone is making me feel better than I have felt in years.  So..... still don't have a definite diagnosis!  I will have to wait to see what he says in March.

[karajo]

I know it is soooo frustrating! :(

Prednisone helped me, but I must admit that sometimes when I'm weaning off, I have some crazy symptoms flare up along w/ the feeling of hopelessness.  

Even though the ANA is cosidered unreliable, most drs. are really looking at that test as the main deal.  So to play their game, spend time in the sun prior to the ANA test and it will make the ANA elevated.  The sun only affects people w/ lupus that way.  But for the most part, I stay out of the sun as much as possible.

[aapbe]

I just found this thread though Google.
I have an ANA titer of 5120 (since 2 years), and a positive AMA titer, but since my ENA is negative I'm still without official diagnosis after many, many years. The rheumatogist (who has now seen the last of me says I don' thave lupus, althoug I have most of the symptoms. I'm also not on medication (except for pain killers) suc as Prednisone. reason: when I asked my rheumatologist for something that possible could help me or at least stabilize my condition, he refused. reason: he was afraid I would sue him for all he's got when something would happen to me whist on corticosteroids.
PS: haven't been pain free one single day over the last 11 years, and simply have np (social) life because of the pain and the permanent exhaustion.