@hope2005 first I’m sorry you’re going through all this. I went through the same. First I’m going to apologize for this being so long. Although when I first told a rheumatologist over 10 years ago I had joint pain and swelling she just said well you’re a dog groomer you’re going to. I was around 30 and only been grooming 9 years at that point. I was very active, went to the gym, etc. She did test for Lyme that was negative but didn’t test me for too much more. Eventually went to a gastrointestinal doc which sent me for a barium. At first the person doing the test mentioned about scleroderma. When I went back the doctor said no.
Fast forward I was still having problem. Went to the doctor because I was having issues with what I thought was athletes foot. A year of that and finally went to the podiatrist that knew exactly what it was Raynauds. Finally an answer. I was having the tingling, numbness, color change but it wasn’t just from the cold the heat was making it activate. She got it under control with just topical which was great. Fast forward again to bring in my early 40’s I finally went to a rheumatologist at mayo. He ran tests and I did come back with my antibodies test positive with speckles. I ran all the other tests but everything else was negative. My Raynauds isn’t so bad I need to take medication but I can deal with the numbness, etc. He told me I had Raynaud’s phenomenon in which mine has something causing it but don’t know what yet. He said it can take years for the reason to pop up. I go to the cardiologist every year with nothing showing up. I did research to like you and thought scleroderma to. I even had a doctor at Mayo that did my nail fold test say I didn’t have it. Went back to my doctor and he said not everyone is textbook symptomatic. You can do research but don’t fall on just one thing and an ANA can come back false positive. It’s only after being tested more than once and getting positive after positive you for sure have autoimmune disease. Autoimmune can be anything from diabetes, thyroid, to Raynauds, lupus (sister has this), Mönckeberg's sclerosis (great grandmother had this), hypobilirubinemia (my other sister has this). My sister with lupus has multiple health issues but the one with bilirubin issues doesn’t and never was tested for ANA and doesn’t want to be but anything that your body fights itself is autoimmune disease.
The reason it took me so long was because I was so aggravated with doctors and didn’t push and didn’t change doctors or go to different ones. I still don’t know a cause and I’ll be 50 this year. Unfortunately some diagnoses take a long time to be diagnosed. Don’t give up and teach yourself, advocate for yourself and don’t be afraid of leaving one doctor to go to another. When doing research use medical journals, websites by doctors not webmd. I don’t know if my post helped or made it worse but hoping it helps knowing that you’re not alone. My prayers and thoughts are with you. 🙏