Just diagnosed last night really confused with lab results

General
1

Hi- the doctor told me last night that I have SLE> which I have symptoms that follow - ache and pains (flu like symptoms) joints ache on occasion (wrist, back , hips) feel just plain flu-ish fatigue swollen glands and a swollen lymphnode in my neck

I had an ANA 1:160 speckeled - but the rest of the labs don't make sense

Neutrophil cytoplasmic AB IgG was <1:20

my SSA (ro) )ENA AB igG was 8 then it has a f up high with a 1

my SSB (La) (ENA) AB, IgG was 0

my Ribonucleic Protein (ENA), IgG was 0

Smith (ENA) AB igG was 0

Scleroderma (SCL-70) ENA AB was 3

now according to the lab results it states the in order for the SSA or the SCL-70 to be positive it has to be more than 29.

Also the SSA (ro) ENA saus if that's high its seen in Sjogren syndrome,SLE, and progressive systemic sclerosis.

and the SLE-70 (ENA) says scleroderma antibody is seen in patients with scleroderma and is considered diagnostic and specific to scleroderma if it is the only ENA antibody present.

next sentence SLL-70 is also seen in approximately 25% of progressive systemic sclerosis

so even if my titers were High wouldn't I have progressive systemic Sclerosis not Lupus? why is she saying Lupus.... personally I don not want to have Progressive Sclerederma but it seems here quite possible...

I need help the doc wont call me back.......

2

Ok, you were right.. I'm confused as ever... I can say that I feel you on the waiting game.. When my doctor went over my numbers and blood work I was even more confused than I was when I walked in.. It's so overwhelming.. I'm a googler, I google every dang thing and that's not always good.. I take each site for what it's worth and don't put to much faith in them unless they are a reputable site.

Now with the waiting game, I hate it too.. I think they don't see our questions/concerns as urgent even thogh we do. I called both my primary doc and rumy doc about my cuticle on my thumb swelling and have yet to hear anything back. I'm just about ready to go to the er but know it's not that serious.. I know we are both wishing they would respond back sooner, if not the doc then maybe a nurse or someone... It seems like they just leave us hanging..

I'm sorry I couldn't figure out your numbers, if I could help I would without a second thought.. Good luck and I hope the doc gets back with us both soon.

3

With having lupus your labs can be crazy at times. Sometimes they are right on the dot and other they are way off the charts. Hang in there both of you. We are here for you to vent and feel free to ask questions. We are all in this together. It is hard to get some dr offices to respond to us in a timely fashion. I would call back or make a visit to the office. Some doctors or nurses have no clue to what we go through day to day. Keep trying because you will eventually come across someone who knows about lupus and shows concern.

4

So I went threw this for over two years , before I was finally diagnosed, labs are so confusing and I myself had to go what feel like threw a million of them! First they thought it was lime disease or maybe even fibromilega, but after meeting with specialist and the doctors here at Rush memorial in Chicago I was diagnosed . I know it’s confusing and rough but you will get threw the confusion and frustration ! I’m here for you if you ever need a chat! Good luck stay positive and strong !

5

When i frst suffered without diagnose-- i reember I thought for the LONGEST it was SCLERODERMA.

Nobody i knew though had ever heard of that disease. I found it online-- researching as we do.

Lupus and schleroderma really have similar affects.

But based on what your labs and the verbal info you provide your doctor.. they believe its lupus.

But you are always okay with getting a second OPINION.

And dont share anything about the other doc. Allow them to do there own research.

** ANA antibodies do directly relate to lupus from what i have researched. I have them positive too.Most people dont always have them- its just a clear tell-tell sign of lupus on paper though.

When my body is calm- those ANA antibodies are not present. Only in flares/

6

Making me get out my 1000+ page diagnostic lab book here...

Speckled ANA: associated with SLE, Sjogren's, scleroderma, RA, and mixed connective tissue disease

Neutrophils: Negative. You do not have anti-bodies against the fluid part of your white blood cells. This also means you do not have vasculitis.

SSA/SSB: These are usually used to diagnose Sjogren's, however, many people with lupus can have these antibodies as well. For those with a low ANA ratio, like yours, the SSA tends to be positive, even though you don't have Sjogren's.

Ribonucleic: Only seen in 40% of lupus patients, but yours being negative rules out mixed connective tissue disease.

Smith: Specific for lupus, but only found in 20% of lupus patients.

SCL: If the lab is saying it needs to be more that 29 to be positive, and you're only 3, then that means you can rule out scleroderma. There are also over 100 ENA antibodies and only a handful are tested for.

Your symptoms follow lupus. Blood work can change all the time and there can even be false positives. Labs are run by humans, errors happen. Patients with lupus tend to have antibodies to all sorts of weird stuff, even though alone those antibodies can indicate things like scleroderma. But, since you don't have symptoms of scleroderma, just have wacky blood results, don't worry about it. Go with the SLE diagnosis and don't over analyze the lab results. I only have a positive ANA and all the physical symptoms of lupus. My dad on the other hand has a lower ANA than me and has all sorts of wacky blood work that points to about 3 other things beside lupus, but he most definitely has lupus. Doctors go by presenting symptoms for the exact reason that lab work can be error prone.

I hope this puts you at ease a little.