Possible misdiagnosis, second opinion and oh boy these labs!!! 5-6yrs of just worsening and Im exhausted!!😴
So I had written a long and well thought out post which got deleted from the Dr questions room.
So without repeating everything here I’ll try! I have some autoimmune diseases and I think I was misdiagnosed because my labs didn’t test exactly positive or high enough abnormal so I was diagnosed with fibromyalgia. At that time my vitamins: B12, D, iron were very low. My RNP (potentially Mixed Connective Tissue Disorder) tested abnormally high 1.9, but not high enough for the diagnosis.
Age 38/39yro moved to a different state was referred to rheumatology and again my tests came back similar. I refused to take a sorry don’t know, nothing more I can do. So we scheduled for an ultrasound of my fingers, hands, wrists. We did the ultrasound and the rheumatologist explained that you can see the inflammation if any is there. Well apparently a significant amount of inflammation was found and so I was diagnosed with Seronegative Rheumatoid Arthritis.
It’s been 1.5yrs and we’ve trialed the standard meds, DMARDS, 3 biologics; about to be the 4th one next week. Some relief with some of the boney joint pain however there are soooo many symptoms that just don’t fit and I am sickly every day. I may have 2-5 good days in one month.
So I requested a second opinion and that rheumatologist ran a battery of labs. My B12, D and anemia have worsened significantly. The RNP was abnormally high again at a 1.3 (lower than last time). My RBC are very high. But it’s these ANA’s that have me concerned/confused. One test gives disease description and percentages and one says Neonatal Lupus 100%….so does that mean that I’m giving it to my children??
But I’m going to attach some of the results here for your thoughts.
I know we are not medical professionals here and we are not to diagnose here.
What I’m looking for is to make this look less clear as mud; maybe thoughts about questions I should be asking; tests I should ask for???
And oh my ESR and CRP (inflammation test) is always normal….its like a joke!!!
Mods please if this isn’t ok give me time to copy it and give me advice to fix what/how I’m posting and I will change it.
Thank you anyone else for just taking the time!!!
God Bless and Much Love!!❤️