My journey

I was first diagnosed with Mesenteric panniculitis back in June after I went to ER due to terrible abdominal pain and ended up having CT of my abdomen, however I have been feeling very ill on and off over last 5 years with low grade fevers, extreme nausea, bloating, no appetite, weight loss and this past year symptoms became much worse with the abdominal pain, shortness of breath and a feeling of not being able to fully expand my lungs. Last year after a very ill episode and a ER visit, I had a chest X-ray that showed atelectasis and scar tissue in my right lung and it was no big deal to the Dr. In ER or my family DR. They didn’ feel any follow up was necessary. Most DR.s and specialists I have seen have brushed off my symptoms as all my bloodwork always came back normal and pretty much told me I have anxiety and I am depressed. What a frustrating journey this is! After the CT of my abdomen in June a PET scan was recommended due to lymph nodes in my mesentery and to rule out malignancy. Recently had my PET scan which showed multiple enlarged hyler and mediastinal lymph nodes in my chest Leading to probable diagnosis of pulmonary sarcoidosis and the need for a biopsy as they can’t completely rule out lymphoma without biopsy. I am currently on prednisone which really seems to help. Also really watching the foods I eat seems to help too. I pretty much live off of coconut milk, pecans, pistachios, goat feta , garlic stuffed olives, avocado, broccoli, cauliflower and cabbage and a little seafood. If I eat any grains, processed foods, junk food or sugar, I get very sick and have terrible pain. A couple of weeks ago I started having numbness and tingling in my left thigh so I’m really wondering if I have some neuro sarcoidosis going on as well and possibly in my eyes due to very dry eyes and previous pain/pressure in back of my eyes! I also have Hashimotos for last 25 plus years. Some days I feel so sick. Currently I take 150mg synthroid and I’m on a round of prednisone but plan to wean off in next few weeks.