Plz help, I cant make sense of these contradicting test results and my dr isn't helping.

[Aftermidnight__]

when I was 12 it was suspected thatI had Addisons Disease, I had extremely low blood pressure, fatigue, skin rashes, muscle weakness and low cortisol levels, I was put on steroids and made to drink a salt solution for 3 months to raise the blood pressure. Eventually I saw another specialist that said I was misdiagnosed and nothing was wrong, all symptoms had subsided except for fatigue and muscle weakness.

When I was 19 I started getting a swollen right side of neck, it would hurt and throb, then randomly go away, my dr did an ultrasound that showed nothing, then I went to a throat and neck specialist who did a Salivary scintigraphy and was diagnosed with Sjogrens Syndrome. For many years I believed this but never did the blood test to prove it.
Lately my symptoms are fatigue, severe headaches on one side only, neck is still becoming swollen on the same side as the headaches and sometimes it affecks my breathing, if I drink a lot of water sometimes the pain goes away. I am becoming dizzy and shaky often and over eating to try to elimate the dizziness and shakes, my saliva glands hurt when I eat certain foods, IBS symptoms too. I don't know what to make it anymore because my quality of life is falling, I'm barely managing my job. The test results I have had recently are indicative of lupus yet rule out lupus and sjogrens syndrome which I had been diagnosed with... I don't know what to make of it, please help me and tell me what it could mean
I have had two blood test recently, both the same results:

ANA homogeneous titre 1:1280
ANA few nuclear dot pattern 1:160
anti-CCP 7U/mL
anti-dsDNA 3.0IU/mL
Anti-SM: Negative
Anti-nRNP: negative
Anti-SSA (Ro60): Negative
Anti-SSA (Ro52): Negative
Anti-SSB: Negative
Anti-Scl-70: Negative
Anti-Jo-1: Negative
Rheumatoid Factor <10IU/mL

[JenB12]

I have heard of several other people who have Sjogrens but are also seronegative. Theirs was confirmed through biopsy. The problem is your symptoms are very much like the beginning stages of many autoimmune conditions. Has your Dr. also checked your thyroid (low thyroid gave me headaches and dizziness and shakiness). Also since you seem to have reactions to specific foods, have you been allergy tested? It's possible that more then one thing is going on at once.

Hang in there, the road to diagnosis with autoimmune can be a long and frustrating one with many people never getting an answer. For 3 years only my ANA was positive until the last 6 months when new things are cropping up. I guess antibody levels have to be pretty high and consistent to be measured in the serum tests.

[karajo]

They symptoms you listed are:
fatigue
headaches
swollen neck
dizziness
shakiness
?sore throat (saliva glands hurt)
IBS

Your ANA is really high.  It is significant.  

Are you having any joint pain?  Do you feel bad a day or two after you have exposure to the sun?  Do you have any rashes?  

I think the dizziness and shakiness is prompting your dr. to rule out any blood sugar problems.  I know you would want your dr. to just send you somewhere, but it takes a long time to get in to see some of these specialist and if all the test are not pointing to something, they just make YOU feel like the dummy.  Like YOU sent yourself.  At least that is what I have found.  

It sounds lik you have a caring dr. who wants to get to the bottom of this.  

[Aftermidnight__]

Yeah I'm my dr is pretty sure it isn't lupus, especially considering I don't really have the majority of symptoms for that, I'm just wondering what it COULD be, because I need to get healthy I'm sick of feeling like this. He has ordered a glucose tollerance test, for reasons I don't understand, and also ANOTHER brain scan - re the migraines I get, I already had one recently though and nothing came up - however the didn't use the contrast, this time he wants them to use the contrast and has noted my high ANA on the referral, and I don't understand why or what he is looking for. I don't know why he wont recommend me to a rhumatist or something instead, or if he's worried about my headaches, perhaps refer me to a neurologist, it seems like he is just guessing.

[karajo]

It takes more to get a lupus dx than an elevated ANA.  Although 1,260 is a significant level and indicates there is something autoimmun going on.  The homogenous pattern is seen primarily in SLE, but also in other illness.  The nucleolar are not seen in SLE and suggest scleroderma.  But the level for that pattern was just 160.  (which is not a significant level)

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)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash
4. oral and nose ulcers
5. arthritis
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
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out
fatigue
muscle pain and weakness
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
abdominal pain
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
...to name a few

Keep in mind that fibromyalgia, CFS, MS and lymes disease also have similar symptoms.  It can take upto 10 years to get dx w/ an autoimmune disease.  The reason is, the symtpoms come and go and they can't hand down a dx by labs alone.  So it is a process of putting the puzzle pieces together.  Keep good records of how you feel from day to day, making note of any new symptoms.

Meanwhile, these are some things that I have found that helps.  
1. Dont' get stressed out, life is short and circumstances change.  
2. Get plenty of rest...even if you have to take some melatonin or benadryll
3. stay out of the sun
3. eat good healthy things and stay away from sugar.  
4. Keep a positive attitude, actually be agressive about having a good attitude.  It really is a decision.  

Be sure and keep us posted on how things go for you.