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A MyLupusTeam Member asked a question 💭
Brooklyn, NY

Hi All,

I'm new to this board and new to the autoimmune community. I'm turning here for some help/clarity/reality check. Forgive me for the long post. I was diagnosed January 2017 with "early stages of lupus" from one rheumatologist and connective tissue disease from another rheumatologist. (Yes, I am seeing two rheumatologists). I'm ANA negative- thus the limbo phase/quasi diagnosis. I'm aware that a part of me may be in denial which is why I'm here to get some feedback. My symptoms are as… read more

August 4, 2017
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A MyLupusTeam Member

Same here. ANA second time was negative. I have many of the symptoms, so yes it's confusing! The rheumatologist told me that I could have it but it's not active. You can have several ANA tests, one positive one negative and so on do awhile. It's tricky to say the least. My PCP said it's (lupus) there lurking, just waiting to become more prominent. It has over time. I have several other I autoimmune disorders going as well, they all overlap one another and makes it difficult to diagnose just one! So, I have all the symptoms but when I had all the tests done it wasn't as active, so I got s negative response. Whew!! Lol. I hope that helps! 😊

August 4, 2017
A MyLupusTeam Member

Many are all really are signs of lupus, the problem is some doctors have to have that positive test show. I was positive the first couple of time but since then it has never been the same, so going by that blood test can be a long wait, if you had a doctor that needs that. I find my doctor goes by more of the symptoms he knows that test will not always be positive, so yes very frustrating. At least he is treating you with plauqinel . THe ring rash you talked about I get on my inner arms. I remember years ago meeting some who had lupus and I did not at the time, and she should me her inner arm and wrists and she had a disc like rash on it but it was light, she said it was one of the signs like lupus. I said to her of I thought it was normal and just happened when you where cold because I have it. She looked and said well maybe you have lupus also, years later sure enough. Then my knees swelled on day and joints started to ache , I was never one to get hives though. I have a butterfly rash on my face. My hair has thinned out but still have it. Hope this helps some hang in there girl, gentle hugs and blessings

August 6, 2017
A MyLupusTeam Member

I'm ANA negative and was diagnosed lupus in June 2017 with a positive RA factor. I have chondritis in my ribs (have had it for years - didn't know what it was and got trigger point injections for pain), malar rash comes and goes and has left permanent discolored pigmentation on cheeks, joint pain started in wrists and elbows and moved to shoulders hips knees and ankles. Overall inside-out itching for years. Eliminated gluten 7 years ago. Very little dairy consumption. Still have a huge bloated gut and awful stomach pain daily. Bowel habits have recently changed and I'm not sure what to think. I'm not 'typical' or concrete either. And, like you, I'm in denial. My rheumy didn't hesitate on first visit to diagnose me. Seriously going to speak to my pcp this week at my visit about seeing another rheumy just to help wrap my mind around all this. But, I don't want the waters muddied any further. Ughhhh!!!

August 4, 2017
A MyLupusTeam Member

It's very possible you have more then one auto immune disorder. You do not have to have a positive ANA to have Lupus. Many of the autoimmune disorders are treated with the same medications. Plaquenil is often used for lupus. If you are looking for an answer all wrapped in a nice neat package, that is not possible with lupus or other autoimmune disorders.

August 8, 2017
A MyLupusTeam Member

I concur. very frustrating when it is never black and white. I am a registered nurse so all this guesswork hard for me as well.I take Plaquenil, Cymbalta and Alpha Lipoic Acid for the peripheral neuropathy my connective tissue disease has blessed me with. Good luck trying to find answers for all of this!

August 5, 2017

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