CAN SOMEBODY PLEASE HELP ME, I'M SCARED!!

[jsuter69]

I just recently had some lab work done, my ANA came back and my ANA-Titer came back as 1:80...I talked to a lab tech from the hospital and he said my lab work sounds like Lupus...I'm really scared & I just want to break down and cry...
Here's my symptoms
1) Back and leg pain
2) Digestive problems
3) Headaches
4) Hematuria( but the crazy thing is, I've seen a urologist, orthopedic surgeon and a CT Scan and all of these tests came back good...I just don't get it...
Please help me....

[Mom2four85]

wow thanks for posting, I knew someone else would who had more knowledge than I do.

I had no clue though that The #1 symptom of lupus is severe joint pain, usually in the knees...my ANA was negative but my neurologist suspected Lupus so I'm going to ask my dr to redo the tests if she didn't order it (blood work next week).  

[karajo]

Hi Julie, so sorry to hear about what you are going through.  For one thing, even though your ANA was "positive" it is not very elevated.  Even when mine was 1:320, they didn't get fuzzed out.  It wasn't until I spent time in the sun prior to my ANA being checked and it came back 1:2,560 that they took note.  Along w/ 5 out of the 11 symptom criteria for Lupus.

There are 11 criteria for a lupus dx.  You must have at least 4 of the 11 to recieve a dx.

They are:
1. malar rash over cheeks (butterfly rash) (74%)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash (50%)
4. oral and nose ulcers
5. arthritis (95%)
6. serositis - inflamation of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

Other symptoms are:
fever (90-95%)
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out (27%)
fatigue (90%)
muscle pain and weakness (90%)
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
lymph node swelling (50%)
...to name a few

Keep in mind that fibromyalgia, CFS, MS and lymes disease also have similar symptoms.  

Autoimmune diseases can be very difficult to dx and usually takes years for dr. to put all the puzzle pieces together.  The reason is, not all of the symptoms happen at the same time.  They come and go too.  I can feel like there is nothing wrong with me one day and the next feel like I'm dieing.  The #1 symptom of lupus is severe joint pain, usually in the knees.  

You need to also ask your dr to check you vit D level.  Many people w/ autoimmune diseases have low D.  Just going on vit. D helped w/ the bone pain and some of the fatigue.  

Sweetie, we are here to help in any way.  We've all eiether been where you are or are currently going to through the struggles of getting diagnosed.  

Some things that you can do right now:
1. DE-STRESS YOUR LIFE (very important, stress is the #1 trigger!)
2. stay out of the sun
3. try to eleminate as much sugar as possible
4. get good sleep.  If you are not sleeping well, I suggest maybe useing Benadryl.
5. take vitamins.  anyone w/ digestive problems has problems absorbing nutrients and NEEDS to supplement.  
6. try to eat as healthy as possible, also drinking plenty of water

We are praying for you,
God bless ~Kara

[MsWobbles]

I'm suprised a lab tech would even voice an opinion to you since hospital workers have been essentially gagged regarding expressing any opinion on test results - be they radiology techs, nurses, or lab techs.  You got lucky that one risked doing so.

I'm currently with progressing symptoms and no diagnosis, no real leads on what is causing them except that I react to UV rays, so in a way I'm envious of you actually being close to diagnosis.

On the other hand, I can understand that the idea of having lupus could be scary to you.  My suggestion:  Find your local lupus support group and connect with them right away.  They can help put your mind more at ease by providing much-needed information to you about what lupus involves, how to manage it, and about understanding lupus test results.

I can so relate to Lisa33167's comment about "now maybe they'll listen and stop the 'it's all anxiety nonsense' and give you some help."

Lisa, boy have I heard your above quote far too often from doctors.  It's their pat response when they either can't find the real answer, don't care to try to find the real answer, know the answer, but are not willing to give you the diagnosis, or think they have some God-given power to see into our psyches.  My symptoms are real, they are not of psychogenic origin!  

I'm hoping this is the last disease support website I will ever have to frequent - that I finally will get my answer!!

Meanwhile, good luck, jsuter!  Connect with your local lupus support group (even if you are not officially diagnosed yet) with your concerns.  They can help!

WAF

[Mom2four85]

Jules, did it say ANA pattern? such as Homogeneous; Peripheral; Speckled; Nucleolar?
Hopefully someone else will let you know to calm your nerves some...but from what I've read when I started searching - the test is something like this:
1:10 positive
1:20 positive
1:40 positive
1:80 positive [your result]
1:160 positive
1:320 negative

now maybe they'll listen and stop the 'it's all anxiety' and give you some help =) hang in there

[OGoldman]

That's incorrect. The above is an example of the steps a lab takes in evaluating. They diluted a blood sample at those ratios (starting at the top, 1:10) and then tested for antibodies. The last result with visible antibodies is reported as your number. In the above example, the patient's number would be 1:160.