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Regular Member

Date Joined Dec 2012
Total Posts : 134
   Posted 8/18/2018 12:25 PM (GMT -6)   
I have gene mutations from both my father and mother for many many inflammatory conditions, including lupus, and I have many inflammatory issues. However, my ANA is negative. So I don't have lupus. People ask me what I have. I have no idea. What am I supposed to tell them? Where can I find emotional support?

I have/had the following symptoms:

Daily numbness, pins and needles
Ear, sinus, skin infections
Barholin's abscess
Tooth abscesses
Cold sores
Continuous skin infections, inflammation, boils
Sores, including boils, inside my nostrils
Red, raised, oval skin eruptions, which grew in the hot sun
Substantial weight gain and weight loss
Extreme swelling
Severe fatigue
Daily dizziness and lightheadedness
Blue under and around fingernails when cold
Extremely easy for body to get extremely cold
Continuous broken capillaries on chest
Blind for 5-10 minutes
Migraines with partial blindness
Migraines with aura and aphasia
Eye floaters
Gritty eyes from sunlight
Brain fog, aphasia
Colon flareups (ulcerative colitis)
Eye inflammation (iritis)
Muscle, tendon, joint inflammation (arthritis)
Kidney inflammation (nephritis)

Regular Member

Date Joined Dec 2016
Total Posts : 46
   Posted 8/19/2018 8:05 AM (GMT -6)   
You CAN have Lupus without having a positive ANA!!!

Lupus is diagnosed by exhibiting 4 of the 11 diagnostic symptoms (read about these in the Lupus 101 thread).

It looks to me like you need to have a through examination by a rheumatologist -- these are the Drs who specialize in autoimmune disorders and they should be able to help point you toward a diagnosis and treatment.

Best wishes.

Regular Member

Date Joined Dec 2012
Total Posts : 134
   Posted 8/19/2018 11:22 AM (GMT -6)   
I saw a rheumatologist back early 2016. I had a flareup that lasted for six months. The muscles would hurt whenever I moved. I couldn't life my right arm. I couldn't move my neck. I could feel the gravity weighing down on my body whenever I tried sitting up or standing. It hurt. My feet were red and swollen. I had trouble walking. It felt like I was walking on small rocks. My eyes got gritty, and my right eye got all red and swollen when I had to go outside on a very sunny day. My PCP referred me to specialists. The ophthalmologist said I had eye inflammation. The urologist said he saw white blood cells, referred me to the renal department, and I was later diagnosed with chronic kidney disease by the nephrologist who said that my kidneys were inflamed (and they still are). The rheumatologist said I was "a puzzle." He didn't know what was going on. But he did say that it wasn't lupus because my ANA test came back negative. He didn't ask me anything about the 11 diagnostic symptoms. He ended up diagnosing me with arthritis because I also get joint pain. He said that the muscles can also get inflamed with arthritis.

I believe you though when you say you can have lupus without having a positive ANA. I just don't know why my rheumatologist would rule it out.

I'm seeing a functional doctor now. I do have the STAT4 gene mutation from both sides, which is associated with severe disease manifestations of lupus. But gene mutations tell only what I'm predisposed to and not what I have. And I also have a bunch of other inflammatory-related gene mutations from both sides, especially in regard to autophagy. My functional doctor is focusing on the autophagy issue because I have three out of a possible four gene mutations that are related to autophagy, and they are mutated from both sides.

Still, I have no idea what to tell others without going into a long monologue.

New Member

Date Joined Aug 2018
Total Posts : 2
   Posted 8/28/2018 6:32 AM (GMT -6)   
Wow those are really bad symptoms. Have they ever tested you for primary immunodefiency disease? The fact that they claim you don't have Lupus surprises me, and those skin boils could be part of your ulcerative colitis if they ulcerate as well. There are some people who only test positive ANA after years or only sometimes so I would not hestitate to perform the test multiple times again!
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