← Return to Lupus or not Lupus?

Discussion

Lupus or not Lupus?

Autoimmune Diseases | Last Active: Jun 7 4:17pm | Replies (55)

Comment receiving replies
@michelecallahan

I have been all over the map with auto-immune disease symptoms, tests, etc., and I will add this: I was constantly looking for a specific diagnosis. I just wanted an answer. What I've learned is that it isn't that easy. There isn't a specific treatment even if you get a specific diagnosis. They treat symptoms, not the disease itself. For me, I had doctors that said probably Lupus, a doctor that said sjogrens, etc. But the bottom line turned out to be that it really doesn't matter which of the hundreds of auto-immune diseases it is because they treat the symptoms, not the disease. At least this has been MY journey. So after years of not knowing specifically which auto-immune disease I had, and being treated for a lot of various symptoms (usually with prednisone), I ended up having 2 heart attacks. A heart biopsy verified that I have lymphocytic myocarditis, and I received a heart transplant. But I also have various other auto-immune diseases, including psoriatic arthritis, fibromyalgia, and a few others. Again, when symptoms flare up, they get treated. I hope this is helpful for those that just want an answer. Sometimes, there isn't a specific answer. And I'm ok with that now that I truly understand how it works with treatment.

Jump to this post


Replies to "I have been all over the map with auto-immune disease symptoms, tests, etc., and I will..."

To @michelecallahan, thank you for your reply and totally grasp the concept of what you are saying. I agree that a specific dx is not necessary, but my Drs are not even treating the symptoms!!
P

@michelecallahan - YES!!! THIS!!!! I have various autoimmune symptoms. Sometimes positive ANA, sometimes negative ANA. Always positive RF and in a flare, my inflammatory markers go up tenfold. But what do I have? That's what I kept asking. I kept bringing in old tests "Look my creatine kinase is elevated! Look I have a V-sign on my chest!" On Monday, my doctor finally said "I know you want a diagnosis that's neatly tied up with a bow, but at the end of the day, it doesn't really much matter which it is - we treat the predominant symptoms, which in your case most closely matches spondyloarthritis with back pain and hip flexor pain, even though you don't have the gene and you have other overlapping symptoms." I left that appointment feeling like I may never know exactly what my diagnosis is, and I've decided that that's ok.

I hope you are feeling better since your transplant and that your flares have been few and far between 🙂