Frustrated over new dx

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New Member

Date Joined Oct 2013
Total Posts : 12
   Posted 4/14/2014 11:17 PM (GMT -6)   

I have posted once or twice before, and have been in denial over having an AI. Now I am getting more depressed and frustrated over new dx and no real answers. I was hoping maybe someone could shed some light. I have been ANA + in all blood work drawn 1:2560 to 1:640 at the low end, I have joint and muscle pain that has been persistent for about a year, chest pain without swelling in heart or lungs, muscle weakness, constant fatigue, very faint (probably developing) rash on cheeks that usually appears the next day after being in the sun, and I have now been diagnosed with partial frontal lobe seizures. These have been happening for the last two years and I was told I needed to see a psychiatrist (which I did and all they said was I had depression), now finally the seizures happened enough times that the neurologist declared them as such following EEGs and MRIs and so on. The kicker is my blood work is all normal for the other lupus markers other than the ANA. So my rheumy is still wavering between fibro, UCTD, RA and lupus. Has anyone had this where you have 3 or 4 criteria and clean blood work?

Thanks in advance!


Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 4/15/2014 9:42 AM (GMT -6)   
I have 5 markers.

My rheumy told me that ANA changes. but once diagnosed you don't need it checked again.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 4/15/2014 3:52 PM (GMT -6)   
You don't need a positive ana to be diagnosed with lupus. ANA is not a test for lupus and can be present if you do not have it. Most of us were diagnosed with a combination of clinical symptoms and labs, ANA one of them. Frustrating to be in diagnosis hell but many of us have gone through that. Might be time to seek a second opinion. If you do have lupus a rheumatologist, not a neurologist, would be the best type of doctor to see. Just make sure he/she has experience with AI diseases.


New Member

Date Joined Oct 2013
Total Posts : 12
   Posted 4/15/2014 10:51 PM (GMT -6)   
I always test positive with a high ANA, it is the others like the anti DNA and those tests that are coming out normal. The neuro was to tell me that I was actually having seizures. This is my third rheumatologist.... Ugghh! I hate going to one doc after another to try to get a straight answer. I just want to feel normal again :(

Regular Member

Date Joined Jan 2014
Total Posts : 360
   Posted 4/16/2014 9:50 PM (GMT -6)   
It's an incredibly frustrating process. It's hard to hang in there, I know. I sincerely hope you get some answers soon.
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss
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