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View Full Version : Not diagnosed, but lots of questions...



jessinmaine
05-21-2012, 01:27 PM
Hi there, I am starting to learn/read up a lot on SLE after getting a positive ANA test about two months ago, and having been referred to see a rheumatologist. My ANA at that screen was 1:640, homogeneous pattern. I have since had some follow up blood work that showed a normal range ANA. The rheumatologist I saw said that I should be reassured by this news, however, he followed this with the statement that my anti-chromatin antibodies were elevated and I had borderline levels on my centromere test. The rheumatologist believes I have fibromyalgia only, due to numerous tender points, as well as a long history of medical issues.

I have done quite a bit of reading on the antichromatin antibody since and have found that it is used as a marker for SLE diagnosis? If that's the case, why would this rheumatologist basically tell me "that test means nothing" because the second ANA was normal. -sigh-

I've asked him to send me the lab specifics, but haven't received those in the mail as of yet. I did bring this up to my primary care and she has put in a referral for a second opinion.

Anybody have a positive, then a negative, ANA test before? Also, what is your experience with the antichromatin test? Can it be elevated in other autoimmune disorders? I have hashimoto's thyroiditis and I think the rheumatologist believes that the high ANA a couple of months back was due to that autoimmune issue.

help? This is all so confusing...

:)

tripLexie
05-21-2012, 01:41 PM
You DEF. need to get that second opinon. RUN, not walk, from that rheumy. Most everyone here is familiar with the lovely flucuatiing of ANA levels and antibodies. I had a positive ANA ten years ago.. And since then (probably about 30-50 tests done to try to decect that ANA level again) I've only had it come back postive once, two months ago. These things change and they do not know why. Some rheumy's that see a positive result on an ANA won't ever test for it again. Though, I've began to learn that the younger the doc, the more reliant he is on bloodwork and bloodwork only. You need to find a rheumy who listens to YOU as well as values your one time abnormal level of antibodies.

I don't know much about the antichromatin test.. If I've had it, it's been normal I suppose. I'm sure someone here can offer some information on that aspect.

Also, you may quite possibly have fibro- but with an elevated ANA - you shouldn't be 'reassured' when it comes back normal. It means nothing. I'm not trying to scare you into thinking you def. have SLE, or any other AI disease, but just becuase it's normal again doesn't mean nothing is going wrong with your body and don't let any doc try to tell you that. Researchers haven't been able to find any correlation with disease activity or severity based on these levels and why they flucuate. Although, some of the more seasoned Lu[ies here begin to 'learn' their disease after so long.. They can begin to feel a flare, sometimes they just 'know' their bloodwork is off the charts durign certain points.. Etc. But that's just the thing. Everything is SO uncertian.. Which is why it's such a hard genre of diseases to dx. I suggest you get several second opinions. Never hurts.



Welcome to WHL! Feel free to ask ANYTHING, chances are someone here has some advice. Or, you may just need a shoulder to cry on! We're all here!!! : )

Pat Schulze
05-22-2012, 01:07 PM
I think the positive, then negative ANA is common. I've had it and it doesn't seem to have much to do with how active the lupus symptoms are. I'm also confused!

jessinmaine
05-29-2012, 06:30 AM
I have gotten the results on my blood tests, and it really hasn't helped lol. The ANA isn't displayed in the titer format and I have no clue how to read it. I scored a 7, and the normal range is 0-10? Chromatin levels were three times what would be considered normal range. My ssDNA was elevated, as well...

Thank you for your responses. I am glad I can come here with some of my many questions.

tgal
05-29-2012, 07:49 AM
The confusion is coming from the information the doctor gave . Once you have a highAna with titters and pattern it is not kist ignored when it comes out normal the next time. There is no "Lupus test" so in order to get a diagnosis they look at all of your symptoms. They don't just look at what you have now, they look at the history and and one to another. Most of us have Ana positive bone day and then negative Ana another. It means nothing. Some really good docs will never even take an ANA again after a string positive reading because they have the answer they need also, the reason you don't see he tigers or patterns on this new test is because you came in normal range. They don't test further when it comes back normal.

Basically what is happening is that the doctors are gathering evidence in order to diagnose. Keep copies of all of your labs ( some of us print out a sheet of paper that has all he abnormal labs on them so it is easier for new docs to sift through


I know this is time consuming and frustrating but it often is a slow process.!we will be here for you

theLword
05-29-2012, 08:45 AM
Hello all and welcome Jess!

I second Lexie about getting a second opinion -- better safe than sorry.

Also, I think that the medical field is just simply scared of Lupus. So scared that they don't want to give us a solid answer about ANYTHING. Every article that I read says.. you may have this or you may not.. blah blah blah.

Here's the thing -- at one point you were tested and the results showed that there was some activity in your body that was not normal. For most of us, this may be representative of a flare. There is usually a beginning and an end to a flare so my assumption would be that the second time you were tested you were not currently in a flare, so your body was not showing the same activity. I think this is why it takes so long for many people to be diagnosed. Unless you go to the doctor when you are very sick and your blood work comes back the exact way it should, it's going to be difficult to diagnose.

So whether you have fibro, hashimoto's or lupus.. with the right doctor you should get the right treatment.

Sorry for my rant :) Just frustrated today with the ambiguity that is Lupus!

Regardless, I hope you get some answers soon!

tgal
05-29-2012, 09:15 AM
Actually... Sometimes the bloodwork won't ccome out even when in a flare. Lupus plays by its own rules and sadly no one can figure out just what they are yet!

JeanneA47
05-29-2012, 01:42 PM
Hi everyone....I am Jeanne and brand new to this support group - I have spent the day crying and getting more depressed because the rheumatologist told me my ANA was elevated, but she wasn't sure if it is lupus or not - meanwhile, all my doctors just don't know what to "do with me"...I have severe inflammation all over my body, and bone pain that feels like a charlie horse all over....my blood tests 15 years ago said I had high level Lyme Disease, Parvovirus B-19, and that my blood was "lit up like a Christmas tree", but he thought it was related to fibromyalgia....now 15 years later and suffering worse than ever....the only thing I know for sure that may be the cause is that I had 18 injections of alpha interferon for vaginal inflammation after the birth of my son.....I am so sorry for blabbing on and on so much....but I feel like I am going crazy!! Any suggestions would be so appreciated. Thank you all so much for this forum!!!!

jessinmaine
05-30-2012, 02:28 AM
thank you everyone for your responses. it means a lot to have a place to come to to vent about all of this...

At this time, there is no rheumatologist accepting new patients within a 2 hr drive of where I live, so I am stuck in a limbo wondering... I did call my endocrinologist and got an appointment tomorrow and I am thinking he may have some answers regarding my ANA results... since hashimoto's is an autoimmune disorder, some docs think my ANA was high due to that I think. Anyways, I will be asking him tomorrow to help explain my results, since the first doctor basically dismissed me.

Jeanne, I hope you get some answers too. It is a lot of crazy-making on the part of the docs regarding these tests. I have been obsessed with finding an answer since the doctors, without telling me why, said I needed to go to a rheumatologist over a "lupus" diagnosis. I was flabbergasted nobody had told me about my test results before I got the letter from the rheumatologist. I also have pain all over most days, and tons of fatigue since my teen years. It's not fun and I am taking two antidepressants to try and feel better.

Nicki
05-30-2012, 09:58 AM
I have never had a positive ANA test but I had 2 negative tests and was initially told I don't have lupus based on the tests. My doc told me that a positive doesn't always mean you have Lupus and a negative. About 4 years later, I had a skin biopsy of my lesions to see if it was lupus. My dermatologist then explained that a negative ANA doesn't always mean you don't have it! You can read all about my experiences before and leading up to my diagnosis here. http://thenlistblog.com/2012/05/14/the-day-i-thought-i-had-lupus/ Good luck!!!