[MelanieBlue]

Hi!

I have no diagnosis of anything yet, which is what brings me here.

I will try not to bore you to tears.

8 years ago, I had a "flare" (for lack of better term right now) during a time of extreme stress. During this episode, it began with this burning pain very low in my sacral spine. Then, it progressively got much, much worse. It stayed localized, but intensified - sometimes moving slightly to the left.

I also had this pain on the left side of my chest, right below my ribs, near the mid-line. THe pain would cause me to shove my hand under my ribs. I don't know why I did that, but I just did. I am not sure how to explain what that pain felt like. They also found a spot of costochondritis on the left side.

I wound up doubled over in pain, barely able to walk or function for three months. I wound up having an exploratory laparoscopy which only showed inflamed fascia around all of my abdominal organs. They removed my appendix, but it tested out just fine.

Eventually, with uneventful PT and Paxil (don't get me started on that stuff), it did go away. I do not know if they even looked at AI issues at all then, to be honest. I know that 8 years ago was a long time, but -

Fast forward to now. I am now having EXACTLY the same symptoms, with a few extra bonuses. I have extreme fatigue, pain in my shoulders, left hip (deep inside and then something that feels like sciatic pain), fleeting pain in my chest (sometimes when I breathe in, sometimes completely random - feels like those "growing pains" that you would get as a kid), some depression, definite "brain farts" where I trip over words or completely forget what I am talking about or doing, a few months ago, I went in to have some numbness in my left elbow, forearm and hand evaluated, 6 week "bruising" of the white of my eyes after my lasik (I was told it would go away after 2 weeks), random low fevers (never above 100), and some blood tests finally done two weeks ago....here's where my question comes in, I promise.

Here are my results ( I don't know about relevance) -
*x-ray showed mild scoliosis (I don't think that's a big deal)
*CPC showed extreme anemia
*Urinalysis showed Bili of 1+, Ket 2+, and trace protein (fwiw, I ate 8 hours pior)
*Positive ANA - no other details
*anti-dsDNA of 9 - considered "indeterminate" (whatever that means)
*RNP - antibody - positive 1.2
*chromatin - neg
*sm - neg
*sm/rnp - neg

I believe that you can have positive ANA and be "normal" or have a host of other conditions. My anti-DNA is not considered positive, but is it normal for someone without any AI issues to have a reading of 9 ever? Most of all, is it ever normal for a completely healthy person to have a positive anti-RNP? Mine is obviously a low positive, but it is positive nonetheless, right?

The doc is ruling out "anything growing or bleeding inside" before he addresses the issue of "a pain syndrome" (his words). So, I am getting some CT scans of my pelvis and abdomen just for kicks.

I rambled and I apologize. As you all understand, I am frustrated and tired of being tired - you know? Thank you all in advance for any insight. I owe you a cookie if you got this far.

Melanie

 

[Lily]

Hi Melanie and welcome

It's not uncommon to have a first flare when you are under a lot of stress. Stress does terrible things to our immune systems, especially if there is an underlying abnormality already lurking just waiting for an opportune time to present itself.

I think considering some of your symptoms and your test results it certainly deserves a more indepth look and follow up. Is it a Rheumatologist who is currently looking at your situation or just your GP? I am assuming Rheumy by the tests that have been run, because most GP's don't look much further than an ANA test.

A mild scoliosis is not an uncommon finding in the normal population, but it's interesting to note that Lupus will often 'go after' some normal sort of glitches in our makeup. I had a lot of hip, low sacro and other sorts of pain as some of my first symptoms when lupus first reared it's ugly head in full force. Like you that's all they found,,,,,,,,,, a mild scoliosis,which certainly didn't explain the pain I was getting in those areas.

Have they given you any reason for the anemia, i.e. have iron and folate studies been carried out as a possible cause? Do you get heavy periods? etc. etc.

Lupus diagnosis is often one of ruling out other causes for many symptoms (seeing as how those symptoms can be present in a lot of people for various reasons). Certain criteria must be met (refer to the 'sticky post' at the top of this forum) and blood results. It can often take expert eyes though to put it all together, a bit like a jigsaw puzzle.

The urinalysis results are odd, but once again other causes need to be ruled out. A trace of protein is not that significant towards a Lupus diagnosis as it can even come from skin contamination, higher levels along with blood present would be more in line with Lupus related kidney problems.

The Anti-DsDNA depends on what your lab finds as normal. If it's still within normal range then normal immune system activity in anyone can explain it's presence. However if it starts rising and is out of range then it's very significant as far as diagnosis goes.

I don't know a great deal about RNP never having had a positive I know that mine have always been stated as being negative. So whether there is in fact a range of normal or not I am uncertain.

It's strange how you have listed the RNP as positive at 1.2 then go on to have results for Sm as neg, and Sm/Rnp as neg? Were these how the reporting paper stated them? Usually what is called an Extractable Nuclear Antigen test is done ENA for short. This includes:
RNP
Sm
Ro (SSA)
La (SSB)
scl-70
Jo-1
Pm-scl

so 7 tests in all and 7 results given

It's also strange that the ANA is listed as being positive but does not give a titre and a pattern or even if the newer ANA direct method has been used they usually give a number.

Bottom line is though you will need a very good doc who is very familiar with Lupus to diagnose you or alternatively rule it out. It might pay to post in Find a Doc section and see if anyone near you has any recommendations as far as lupus savvy docs go.

love
Lily

 

[MelanieBlue]

Thank you, Lily.

I am still only under the care of my regular doc. So, these are tests run by him. The numbers and results I have are exactly what I have. There are no other things listed, except other blood tests that were normal - cholesterol, blood sugar, etc.

I have decided to let my doc rule out what he feels he needs to rule out - just in case, you know? Then, I will pursue the other avenues. I would just be highly surprised for there to be something else going on, since my pain is exactly the same (varying only in intensity) in most places, with the few additional things now.

My iron levels were "almost non-existent", and the doc thinks this is due to my intake. So, he will start me on supplements and recheck me in a few weeks. I didn't get the results in my own hands to see numbers on that test.

I appreciate your response.

 

[KarolH]

Hi Melanie and welcome to the board.

My first set of blood work was similar to yours. I had a positive ANA but no titer was reported. When I asked my doctor why there was not a titer listed he said they only list it if the doctor asks for it............whatever! Along with other abnormal antibodies I also had a positive RNP but mine did not read like yours. My RNP (and I am going on memory so don't quote me here) was 254.

Long story short, just last month I had a in depth conversation with my Rheumatologist about all of these "ABNORMAL" results in my blood and I came right out and asked him a very similar question to what you are asking here.

He told me that a small percentage of the HEALTHY population can have a positive ANA but a healthy person will NEVER have a positive RNP.

I hope this answers your question. I agree with Lily that typically they do test for what she stated. I think you need more blood tests done to help paint a clearer picture. Your symptoms do sound like Lupus symptoms but together with some more blood tests should help the doctor evaluate your situation better.

I do hope to get to know you better. Are you in the UK or US? Anyway, join us in the chat room sometime.:wink2::wink2::wink2:

 

[MelanieBlue]

Karol, thank you so much. That was EXACTLY what I was wondering. I have searched and searched and not seen one article, website, page, blog, or google image search (okay I just like doing image searches for funny pictures) that said one single thing about a healthy person having a positive RNP - even a low number, like mine. I just can't help but feel that my two instances and my other "coincidentals" are more than just coincidence - kwim? Whether it means Lupus or something else, I'm not certain.

Now, I will let my doc give me a stupid CT scan and then carry on. So, if anyone wants to join me for a barium night cap, at say, oh 9 o'clock EST, I'd love the company.