Hi everyone, I found this nice community while looking for information about scleroderma. I live in Bulgaria, Europe. I would like to share my story and hopefully get some opinions on what is going on.
My problems started almost 3 months ago with a sudden hives rash on my legs, arms and part of my upper body. On the next day my hands suddenly got swollen and have stayed like this ever since. It is not extreme but I cannot wear my rings any longer.
I visited an allergist, rheumatologist, dermatologist. I had a positive ANA 1:320. The test also showed other abnormalities - mild anemia, bilirubin that was higher than normal. The ana profile showed that I have scl-70 but also dfs-70. It is a totally different scale that the one you are referring to in posts that I read. The upper limit was 6 and I have 30 scl-70 and 60 dfs-70. Additionally I have been very fatigued, had nausea at times, swollen knees. RF also tested slightly positive. In spite of all this the first rheumatologist I visited said I was fine and I should just forget about it and go on with my life.
Meanwhile I consulted an immunologist and tests were rerun. My second ANA screening a couple of weeks later was 1:1280. I switched the doctor and the new one said I only have a dysfunction of the immune system but still was prescribed Plaquenil which I have been taking for 6 weeks without really getting any better. The doctor stressed many times that I should calm down etc.
The problem is that I just don’t feel well and I have a hard time functioning. I am constantly very tired, sleepy, brain fog, racing heart when walking. My whole hands and arms hurt for a while and I had neuropathy.
I don’t even know what kind of responses I am looking for, I just want to hear from someone who has gone through the same.
Thank you in advance