Just know you are not alone!

I remember being labeled with PCOS and even NASH by doctors in the past. I even had an ablation but still had the heaviest periods that were so painful. I was happy to reach menopause just for relief. My surgeon noted my gallbladder that was removed years ago was diseased, but had no stones. He thought lupus was the culprit in all these odd finds (heavy periods, NASH but I didn't drink, and the diseased gallbladder). I had to go to multiple doctors before meeting Dr. Libbey. Most wouldn't remove a gallbladder without stones. I'm so thankful he did. The pain was excruciating. Then when my esophagus wouldn't function correctly, I saw him again. He did a wrap procedure so I wouldn't aspirate on reflux. He saw evidence of sclerosis and suggested a Myomarker Panel. I got that done and have Dermatomyositis overlapping Scleroderma and Sjogrens to add to this autoimmune mess, and now I'm just waiting on appropriate treatment. It's been a frustrating journey. I'm just glad I met Dr. Libbey. Sometimes you have to meet a lot of duds to find a good doctor.

The rashes you speak of definitely make me think of my own issues. I have Tumid Lupus overlapping a form of Dermatomyositis which has Sjogrens and Sclerosis overlapping symptomatology. I've had swallowing problems and surgery on my esophagus due to GERD. The Myomarker Panels really showed more of a full picture, and what was mislabeled as fibromyalgia was Myocitis for me. I always wondered why plaquenil never helped and why sun and respiratory sensitivity set off flares. I've tried Methotrexate just recently, but I'm very allergic to it. When it's finally out of my system, we'll try something else. Right now I'm loving Prednisone helping this allergic reaction subside. I have a feeling Immunoglobulin will be what helps the most, but my insurance wants to exhaust cheaper meds first. My brother had great results from immunoglobulin as a child.

@A MyLupusTeam Member I totally agree. They’ve told me that I don’t have pcos and my menstrual has always been a mess. Ever since being diagnosed I have been through a lot of struggles with my body. Going from playing basketball and running track to achy bones and body all over. I thought I was taking care of my body while doing sports but it seems it messed it up. But in regards to the good days yes I definitely cherish them with all that I have because there are very few. Thank you again.

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A MyLupus...

My heart goes out to you. Being newly diagnosed it can be overwhelming. My cycle was always messed up. I never made that connection to lupus and no dr ever suggested that it was. I had endometriosis and PCOS, anemia and just before my hysterectomy at 41 I bled for 332 days straight. I know lupus can mess up just about everything in your body so maybe it was. I hope you find the answers you need. It’s important to try and stay hopeful. It may not feel like it but there will be better days sometimes and those are the ones to treasure and make memories with your family.