View Full Version : Neg. lupus blood test, but almost every symptom!?
02-03-2009, 10:11 PM
I can't even begin to explain how hopeless and confused and upset I'm feeling. I'm a student that is trying to decide if I'm going to be able to join the Air Force.
About beginning to mid December I started getting a rash under my eyes and on my upper cheeks. They game me different steroids and other meds and some of them would work for a few days and then the rash was RIGHT back. So now it's beginning of Feb and I just recently went to a derm. nurse practitioner who requested a bunch of blood tests besides just the lupus panal my dr requested (which I found out today was negative) My mom has fibromyalgia and raenoeds disease. I'm 22 years old and these are my symptoms
rash under eyes, a bit on lower cheek and some on my arm
ive had a rash under my arms (not razor burn) for years now
always tired and feeling like I'm dragging
sore muscles and joints
light nausea (sometimes)
past diagnosis or anemia
irregular periods since 16 years old
unreasonably cold hands and feet
can never get comfortably cool or warm (always too hot or cold)
bowel problems including:
blood with bowel movements
days with no bowel movements
oct 31st small bowel obstruction
trouble concentrating (brain fog)
protein in urine and bacteria in urine
light stomach pain
night sweats every now and then
I feel like everything is in my head or something. My dr basically said the lupus test was negative and they don't know what else to do so just to keep going to the derm. I havent gotten the results back from the ones the derm. requested. (dont know what she requested exactly)
Could I still have lupus with a negative test?
What and where do I go now?!!? thank you
02-03-2009, 10:43 PM
Welcome to the forum Heather
No you cant fake this kind of illness but your right there are some very shallow ppl out there who more often than not dont have the understanding of lupus or any other kind of auto immune system illness'
There are lots of nice ppl on here that can help you with any sort of worry you have, so happy posting,
im glad you have your mom by your side thru out it all, it sounds to me as if you bounce off each other,
remeber your not alone, we all are going thru the same pain and upsetting things from day to day life
My name is Rob, I'm 41, and was diagnosed with SLE 5 years ago. On the surface, you certainly have some rather distinct symptoms that are often associated with Lupus. When you mention blood tests, are you talking about an ANA test? You can have a negative ANA and have Lupus.
You mentioned you are seeing a Dermatologist. You did not say if you are seeing a Rheumotologist. Generally, they are the specialist who will diagnose and treat Lupus. If you are not seeing one, I would ask your Dr. if he/she could refer you to one. Also, you did not mention if you have been prescribed Plaquenil. It's one of the most common drugs used for the treatment of Lupus.
Lupus, is a notoriously hard disease to diagnose. Trust, me, I do not think your problems are "in your head", and neither should you. With your symptoms and your mother's health history, Lupus is a possibility. As far as joining the Air Force, I certainly do not want to discourage you from that goal. I was in the Army, and I can tell you that you want to have any, and all health issues resolved before you join. Basic training can be very rough, and it's made to be intentionally stressful. You will be absolutely exhausted all the time. Not the environment you want to be in if you do indeed have Lupus. I would take things one step at a time. First find out what's causing your symptoms. Then decide on joining the Air Force. I hope you can find the answers you need, and I hope you can achieve your goal of joining the military.
Welcome to our group. Please, feel free to ask any, and all questions you may have. We are a laid back bunch, and there are a bunch of members here who are in the same position you are in regards to not yet being diagnosed, so you are certainly not alone. Make yourself at home.
02-04-2009, 01:06 PM
awwwww, hi Heather! My names Jeannette and i just want to say you are sooooo not alone!
You are mirroring me to almost a T!
My drs so sick of me she rolls her eyes every time i try to tell her somethings wrong!
I was beginning to think it was all in my head for a while there to. My husband is the one who said "its not because you never used to get sick, you exercise,you eat right and you get sick all the time now". He got pretty scared. Ihave so many of your symptoms and my blood tests keep coming back "ok".
Its frustrating,my dr even told me "theres nothing wrong with you Jeannette,its in your head,you need to just settle down". I wanted to put my hands around her neck!
my neighbors a nurse and she told me to read my own body and dont listen to what the drs "think" is wrong because im the one living it! Im on the search for new drs.
im sorry you feel so bad but your not alone :) I take it one day at a time and some days i just cant do as much,its an adjustment that my whole family and i are trying to deal with.
Take Care Of Yourself! :B-fly:
02-04-2009, 05:00 PM
So I called the lab today, and I guess the only blood work my dr has gotten back so far is just my red and white blood cell count. Any of the blood work for lupus is not back yet.
I'm sorry I don't know what all the abbreviations are that you guys use. I don't know what kinds of tests they ran either.. they just said it was a "lupus panal" and my derm. did say that she would most likely be sending me to a rhematologist. She also said that next time I see her she was wanting to do a skin biopsy (she's going to test right under my eye and she said it would leave a scar) my mom wants them to give me a kidney biopsy because she was told that was the best way to get more results.
I guess for now I'm just waiting to get the blood work that was for lupus back and then see what is said. Unfortunately I don't have insurance so this is all exhausting all my funds. any comments or advice you guys have is more than welcomed!
02-05-2009, 05:42 AM
Sending you gentle hugs as i too mirror everything thats been said.
Sorry to hear about your frustrating symptoms and lack of doctor support. Autoimmune diseases are very frustrating to both patients and doctors. It may take years for enough specific symptoms to appear before a doctor will diagnose you. It took me 13 years. The important thing is to keep believing in yourself no matter what anyone tells you because you are the only one who knows how your body feels and it is your health.
Several years ago most labs changed how they perform the ANA test. Your blood used to be looked at under a microscope by a lab technician. In the new test your blood is run through a computer and it has been known to produce false negative ANA results. My blood has demonstrated it at least 3 times now. If your results come back as a titer such as 1:640 ect. then you had the tried and tested titration method. If it comes back as a single number then you more than likely had a computer test your blood. I've been writing all my weird autoimmune medical experiences in a blog to help others and I have provided medical journal article links incase you need to convince a doctor.