Early stage Lupus/ ANA test questions

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Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/19/2014 10:17 PM (GMT -6)   
Hey there, I'm new here.

I'm a 19 year old white female. My mother has no history of lupus in her family and my father is adopted with no medical records. I have fought GI issues my entire life but in the last 5 years have had 1 complete mental breakdown w/ depression and anxiety (That was when i was 14 and I came out of it, it wasn't seemingly caused by anything just happened and was something that had to work itself out). I struggle with minor social anxiety and I think it's more a product of the generation I'm growing up in (I have several friends who are the same as me). My GI issues are cramping, and IBS related symptoms (never been diagnosed). Constipation and bleeding and diarrhea fluctuating.

I have had a rash on my face before, I think it could be the Malar Rash/ Butterfly rash. It stars on the bridge of my nose and the corners of my eyes (Is this something typical?). It's blotchy looking, slightly raised flat bumps when severe flake. They don't go out over my cheeks but my cheeks could be red.

I get the same blotches on my joints= knees, elbows, finger joints and knuckles. I don't get rashes anywhere else, these rashes do not hurt badly or itch (I would say occasionally they hurt when rubbed as do the ones on my face). They are only on the joints, and are primarily on my knees and elbows over other joints. They start bright red as smaller circles and eventually the circles envelop each other to make a quarter or bigger sized blotch that is bright red and fades to purple and then brown and 'goes away'. Oddly enough these usually happen on my left side versus my right side (Not saying they never happen on my right side).

I don't know if I have fatigue but I need a lot of sleep, I sleep 10+ hours a night and take 2+ hour naps and when I manage to make it through a day without naps I end up crashing hard around 9 pm (I wake up around 9 AM). Is this something common? I don't have trouble usually doing daily tasks and feeling tired, I can grocery shop and take walks and drive fine (I'm not a horribly active person, intense exercise is painful for me). I used to get very restless sleep, waking up every 20-45 minutes, spending hours awake at night. I was put on Trazadone 100mg as a nighttime sleep aid and I now sleep solidly. (As I'm sure most of you know, sometimes when you can't get a diagnosis you just learn to deal with the worst symptoms)

I have always had a resting heart rate over 90 bpm.

I have some side pains on each side pinching pain. I have recently been having back pain near the bottom of where my lungs would be (i guess this could be kidney?). Neither of these pains are horrible and they don't really prevent me from doing my stuff. I have also recently had what I thought was heartburn, it feels like a stabbing pain in the center of my chest below the breast. Right where the sternum ends. On a scale from 1-10 all of these pains are under a 5. The chest pain is the worst but not awful.

I have nervous tremors (only when i'm very nervous which conveniently happens to be at the doctor)

I went to my GP today, this is the first time I have given her the chance to 'solve the puzzle' although my other GP had a chance (He retired and she replaced him about 2 years ago). I've had a colonoscopy and a endoscopy about 2 years ago when I went to a GI who tested blood and misread it thinking I had celiacs and then preformed the colonoscopy and endoscopy for biopsy, I went gluten free until I met with his assistant a month later for the biopsy results which were negative for celiacs because the doctor misread them and my thyroid levels were high (T4? I memorized my numbers and the test names but purged them out of my system because it's hard carrying around these things when people tell you nothing is wrong). I went back on gluten and started living my life again. I was retested and told my T4 numbers were 'barely' elevated. Never went to a specialist because I was 17 and required a pediatric one.

Anyway my current GP reran a blood panel of tests consisting of rerunning the Celiacs panel and an ANA test as well as a vitamin D deficiency test. I am so used to get negative test results that I wanted to ask you guys if what i'm suffering from sounds like early stage Lupus, My pains are mostly mild and I can live with everything except the extreme hours of sleep I need. I just want to catch something if there is something serious early, but my medical history has never been 'easy'. It's hard to have people tell you in there's nothing wrong, and to have your parents back them up. I'm an 'adult' now so I'm trying to see if I can get some more headway on these things i'm dealing with. My GP at least took me seriously and that's always nice. How long do ANA tests take to get back?

Thanks for reading all of this if you did. I asked a question on Yahoo answers about the skin rash, but got no answers. Here's the pictures of my knee and elbow over on Flickr. The pictures are not graphic and are not great quality. https://www.flickr.com/photos/123928918@N07/with/14216723384/

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/19/2014 10:59 PM (GMT -6)   
I wonder if it's psoriatic arthritis since you have flaky skin?

Are you seeing a rheumatologist?
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/20/2014 9:03 AM (GMT -6)   
I am not seeing a rheumatologist, I just started out with my GP figuring she could do the ANA test before I need to go see an actual specialist. My skin isn't always flaky and when it is, it's in a very small area.

I have gotten another symptom that is 100% brand new to me and I had to google it to see if it even fit with Lupus and it does. I have on my upper arm (I noticed it while showering) small spots (pin points) of bleeding under the skin. This was last night, today it's healing up. It was a small patch of petechiae. I took some pictures while it was fresh and I think I will call the doctor.

How convenient of it to wait until the night after I went to the doctor :) It's how it always goes though.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 5/20/2014 9:53 AM (GMT -6)   
There are other diseases this could be as well as Lupus. Your ANA can be either positive or negative and you may still have Lupus. I would plan on getting a consult from a rheumotologist in the near future.

To get a rheumy who is familiar with these auto-immune issues, I recommend visiting www.lupus.org and finding your local chapter. Then contact the local chapter to find out what Drs in your area are working with the association. These are the folks who are most up-to-date on advances in these diseases.

Keep us posted!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/20/2014 10:29 AM (GMT -6)   
Thank you for your suggestion, I sent them an email. I am aware that it could be something other than lupus. I have realized that I am having random heat sensations in a circle area in my right lower leg. They last a couple minutes and go away, they don't burn but are definitely very hot compared to the rest of my body. I have read this could be nerve related.

The doctors office has most of my tests back but they are still waiting on the ANA and RPR test (Syphilis test, I was unaware she was testing for this but I read that a false positive could be indicative of lupus. I am not nor have I ever been sexually active so I presume this was her reason for testing it).

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/20/2014 4:15 PM (GMT -6)   
I hope they tell you the results soon so you won't have to be in limbo so long.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/20/2014 4:27 PM (GMT -6)   
I have results back from half of the tests they did, they don't have the ANA or RPR tests yet but everything else was normal except my levels of Vitamin D are too low. Vitamin D Deficiency has been linked to lupus, I hate that I am hoping for a positive ANA, but I am sick of being told nothing is wrong. I will start taking Vitamin D 1000 MG as my doctor suggested.

Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/21/2014 9:44 AM (GMT -6)   
My ANA and RPR are in, but the doctor is not. They won't give me the values without her looking them over first, and so I have to wait until tomorrow! Ugh, at least it's not weeks. I'm lucky enough to have a doctors office that can do the ANA and RPR in office so I don't have to wait for them to send the blood away.

I'm anxious and impatient but one day is nothing in the scheme of things. I guess I should be thinking about what to do if I get a negative result. I'll probably make a Rheumy appointment anyway just because I have a hunch that I have an autoimmune disorder.

Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/21/2014 8:24 PM (GMT -6)   
I talked to another lupie in person today (it was mere coincidence that I found out she had lupus) and I described to her my facial rash and she said that's exactly what her's looks like. She has cutaneous lupus. It was neat to finally talk to someone who had the same facial rash that I have had (haven't currently had it in a while, i think this may be due to not being outside often been about 6-8 months since I last saw the rash).

Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/22/2014 11:15 AM (GMT -6)   
So my ANA came back at 101, the nurse said this isn't positive but from what I read 80 could be positive? Any help on this?

My RPR syphilis test came back non reactive.

Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/26/2014 2:36 PM (GMT -6)   
I'm feeling very sick today, yesterday I didn't go out in the sun at all (i didn't leave the house all day). Around dinner time I just grabbed a roll (it's a large roll) that we had because I didn't want to make myself anything. I ended up very sick the entire night and still feeling weak and sick today. I have always thought I might be gluten sensitive but this was like full on stomach cramping. I didn't sleep well and I haven't been sleeping well for a few nights (I take a sleeping pill and normally sleep fine but lately i've been sleeping much less and it's less restful).

I am going to go to the park today (yes it's in the sun) because I just need to get out and get moving. I'm struggling today hopefully I feel better tomorrow as it's my first day of work.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 5/26/2014 9:53 PM (GMT -6)   
Hi there first off I'm sorry that you've been unwell and feeling really bad. I hope you feel better tomorrow. It's possible that being out in all the sun has sent you into a flare up of things. That could be why you're feeling so yucky.

As to the results the nurse gave you 101 isn't a normal ANA reading. They are normally a ration 1:40 is negative, the 80 you mentioned is 1:80 which is barely positive, then it would be 1:160 and as you can see it doubles each time. The higher the number the stronger the test result. The Doctor also looks at the pattern of the cell. I'm not certain what test you had done with. I believe you and Lynnwood discussed a different test that was fairly new and the result the nurse gave you would match the number.

I would just wait and speak with the doctor and see what she has to say. Please let us know what she has to say and I hope you're feeling better too.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Spunkymonkey
Regular Member


Date Joined May 2014
Total Posts : 31
   Posted 5/27/2014 1:47 PM (GMT -6)   
So I finally got a call back from the drs. office. I asked for a FANA to be ran (the standard test) because they did a ANA-D, I never get a call from the actual doctor so it was just a nurse. Here's the converstation:

"Hey, this is ******* from the drs office."
"Hey."-Me
"Well I wanted to tell you that the test you wanted WAS already ran it was unremarkable."
"The FANA?"-Me
"Yes."
"What was the value/titer?"-Me
"It was normal."
"Okay, but what was the number?"-Me
"It was unremarkable. The other tests we ran were (this is where she started listing other tests)"
"Yes, I understand. I just want the value of the FANA."-Me
"Do you want me to just mail these to you? Some of the names of the tests are hard to read."
"Yes, mail them. The test I want the results for is the Fluorescent Anti Nuclear Antibody test. FANA."-Me
"Alright I'll mail them, I don't see that one."
"Because you didn't run it."-Me
"We ran it. It was unremarkable. Completely normal."
"Thanks for mailing them." (Hangs up)-Me

Ugh. Doctors these days, don't have a nurse call me to tell me my test results if she can't read them. (Plus I know they didn't run the FANA) I'll see the Dermatologist Friday and I hope that goes better.

jo-ANA
New Member


Date Joined Jan 2015
Total Posts : 1
   Posted 1/5/2015 8:25 PM (GMT -6)   
Hi spunkymonkey, Your rash pictures look exactly like mine did. I'm currently awaiting test results to confirm lupus too.

Keslina
New Member


Date Joined Jan 2015
Total Posts : 2
   Posted 1/21/2015 12:45 PM (GMT -6)   
ANA positive with other SM test or SA test can give the Doctor a good idea where to start digging. I was just a child when I started getting rashes on my chest but not on my face unless I was under the sun. Since ANA can be in other diseases and even in infections, it would be best to understand all of your symptoms. G.I symptoms isn't uncommon, a headache and joint pain and feeling tired are key to understanding beginning stages of LUPUS. It took 3 Doctor's and so much blood work for any of them to seem to care. As my health was becoming debilitating with problems such as cold fingers and cold feet that hurt horrendously in the cold weather or in cold water, lung pain when breathing in and weakness, I refused to leave the office unless something was done. So it turns out Speckle nuclear pattern is seen in LUPUS and the symptoms are and should be reason enough for any person to start treatment which is Plaquenil. Naturally, Plaquenil from my experience has not done anything harmful, yet. As I heard that a disease like lupus would be more destructive vs. the side effects of the drug itself. I've heard of abs DNA LUPUS test that turn out negative in people with Lupus, since I've tested positive once and heard it can go negative and positive throughout life I took another test and it did come back negative. Unfortunately, I have a nodule on my lung and suffer from red eyes.. All before Plaquenil, too. I wonder if there is anyone working on giving more attention to this disease. Not saying cancer shouldn't, but why not have something to spread the word so this crappy disease can go away. 
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