Being tested for lupus and scared.

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Anna White
New Member

Date Joined Mar 2012
Total Posts : 1
   Posted 3/15/2012 11:00 PM (GMT -6)   
Hi all. I'm new to the forums, and new to lupus in general. I was wondering if anyone could share their thoughts on my situation. It may help to put my mind at ease.

I am a 31 year old female. Last year, shortly after I turned 30, I had my wisdom teeth taken out. After getting off the pain meds (percocet & ibuprofen) I had significant joint pain in both hands/wrists, knees, and ankles/feet. That was new to me so I went to the doctor. They did blood work for autoimmune diseases, including lupus. All bloodwork came back negative except for the ANA. I had a speckled pattern of 1:160. I was referred to a Rheumatologist. That was last July.

My joint pain came and went, but at the end of last year it got worse, and became consistent. Then muscle pain began. I was also tired all the time, but that has always been true for me. I was diagnosed with anemia and treated it successfully, which helped my fatigue a lot.

I was talking to someone who mentioned Celiac Disease, and so I returned to my doctor to see if that he could be the problem. She ran another ANA test (this time including a full lupus panel), as well as the tests for Celiac. Everything came back negative. This time my ANA came back negative, all of the test for lupus came back negative, and so did the test for celiac. The only thing that came back positive was a wheat sensitivity.

I have been off the wheat for almost two weeks now, and I feel a lot better. I breathed a sigh of relief, thinking that I escaped lupus. But then I suddenly presented with an odd bruise/rash thing on my right hand. Its near my knuckles and spreads a little over the hand. Its red/purple in color, doesn't itch, and hurts a little like a bruise when I touch it, although I know its not a bruise. Another one appeared on my left hand the next morning.

I don't know what to make of any of this. With a positive, then negative ANA, and all other lupus and autoimmune disease panels being negative, is there still a chance I could have Lupus? I'm specifically worried about Lupus because a cousin of mine died from it last year, and another cousin of mine was recently diagnosed.

I'm in the process of being scheduled with a Rheumatologist. I completed paperwork with a list of my symptoms, and he was to call back to schedule me for an appointment. Instead his secretary called, and said that he wants to see the lab results of the positive ANA. I'll be sending him those, as well as the most recent ones that reflect the wheat sensitivity (and negative lupus panels), and I plan to include a photo of this new bruise-thing that appeared on my hands two days ago.

If anyone has taken the time to read this, thank you so much.

Post Edited (Anna White) : 3/15/2012 10:09:55 PM (GMT-6)

Regular Member

Date Joined Feb 2007
Total Posts : 154
   Posted 3/16/2012 1:13 PM (GMT -6)   
Hi Anna,

Sorry to hear about everything you're going thru right now, it must be very frustrating (and painful) not to have an answer. You know, my Rheumatologist once told me that all of his Lupus patients are like snowflakes...there are no two cases that are the same, and they all present in different ways. I think that is where the difficulty lies in getting a diagnosis. I have read that on average it takes a person 3+ years and 4+ doctors to receive a positive Lupus diagnosis, so whatever it is, don't give up until you have an answer :)

Many of your symptoms sound like it could possibly be Lupus, or maybe some other autoimmune...I have heard that many people have false negative readings for Celiac so I would continue with the Gluten-free if I were you, especially since you said it has been making you feel better. Even though I am not Celiac, I have been seeing a nutritionist to help my Lupus symptoms and she has me on a Gluten, Diary, Soy, Corn and Potato-FREE diet (almost the Paleo Diet, except I refuse to give up eating rice). Its a little difficult to say the least, but my labs have never been better.

Also, I don't know if its because I have kidney involvement or maybe its the other medications I am taking, but all of my doctors tell me I cannot take NSAIDS like Advil or Motrin for pain. It sucks because Advil used to be very helpful for pain. Instead I can really only take Tylenol or a narcotic :(

I hope you find an answer very soon and update us!

SLE, Lupus Nephritis and Antiphospholipid Antibodies since 2006.
History of 2 deep vein thromboses, end-stage renal failure, pulmonary edema, shingles, costochondritis
Meds: prednisone, plaquenil, cellcept, warfarin, lisinopril, baby aspirin, xanax, oxycodone

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 3/16/2012 5:27 PM (GMT -6)   
I know what the odd bruise/rash could be... a popped blood vessel! I get them quite often. I'm just getting over a rather large one now that's on my right pinkie knuckle. It's a very odd thing. I get them all of the time in my fingers, but this is my first one on my knuckle.

I'm rather new myself to Lupus. The pain is what I'm having trouble adjusting too. I take 15mg of mobic a day and a tramadol when the pain gets too much. I'm up to an average of two tramadol a day now (max 3 a day).
The plaquenil will help a lot with the inflamation and a lot of the joint pains.

New Member

Date Joined Mar 2012
Total Posts : 1
   Posted 3/20/2012 9:25 PM (GMT -6)   
Hi Anna,

I've had Lupus for 33 years. The bruise on your hand may not be a popped blood vessel. Without people looking at it, no one on here can tell that. There are many types of bruises and rashest that can come with Lupus or other autoimmune diseases.

Also, for those of us without kidney disease, like Lupus nephritis, taking NSAIDS is perfectly fine.

There are times when tests might be positive, then go into the negative range only to swing positive again. That's why doctors use several blood tests long with other symptoms to diagnose Lupus. Usually, if you have four out of the eleven criteria, you're thought to have Lupus. For example, my ANA is very strongly positive but i don't test positive on the Anti-DNA. ( By the way, that's not the same ss a DNA test, as someone else called it).

If you still don't feel well or continue to have the rash you described, go back to your rheumatologist. If you go to a dermatologist, make sure i1's someone who has experience with autoimmune diseases, too, just in case that's what's causing it.

Good luck. Don't be afraid.

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