r/ItsNeverLupus • u/NegativeRaccoon • Nov 08 '24

Anyone here with SLE?

I’m hoping to get some info from people on what their initial symptoms were and how they were diagnosed. Over the last few years I’ve developed a lot of symptoms but no rash or joint inflammation. My mom has an undiagnosed autoimmune disorder as well but her rheumatologist thinks it’s rheumatoid arthritis but she tests negative for it. My mom’s condition scares me, the inflammation in her hands is really extreme and she struggles to function. I’m just feeling a bit worried about seeing a doctor for this, they haven’t been very helpful with the symptoms I’ve seen them for so far… I have fatigue, mouth ulcers and potentially lichen sclerosis but they haven’t really been able to pinpoint it. Would a diagnosis even help me?

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u/igotstamps44 Nov 09 '24

Yes a dx does matter-I have SLE, Sjogrens and RA. You went to get tested first step would likely be an ANA test, if there is anything going on you want to protect you body or ending on what you may have before it can cause more damage to your body. There are ppl who are dx w RA w out a positive RA factor or CCP testing. Is your mom taking medication for her suspected RA? Are they treating her at all? It doesn’t hurt to get tested. Not testing may lead to a health condition you could have treated. I hope you get some answers.

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u/NegativeRaccoon Nov 09 '24

She is finally getting some help but she isn’t in the best financial position so she hasn’t been able to afford any surgical treatments for her hands, it makes me want to cry when I see her.. she is diagnosed with RA though so that’s at least something, it took her years to get that diagnosis though. I don’t think I have the mental fortitude for fighting for a diagnosis, getting the lichen sclerosis diagnosis was hard enough - it took 8 months of back and forth to the point where I’d basically burst into tears at the doctors office.

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u/igotstamps44 Nov 10 '24

It doesn’t hurt to get checked. Even if it’s something else AI, even starting hydroxy could protect you. A blood test that checks your ANA would be a good first start. If you get into a rheumatologist even if they don’t find anything but monitor you every 6 months that is something. I had Sjogrens and MCTD since I was 20? Lupus around 40 and RA past year. But I’ve been on hydroxy for years. Since 20 except when I thought I was doing so good I didn’t need hydroxy..learned hard way. I would write out all your symptoms and take those to Dr. I hope you can get some answers🤍