Registered: 1495927370 Posts: 1
Hi all. I'm new to this board and as yet have not been diagnosed with lupus. I certainly have some kind of autoimmune disease and am being stone walled by doctors. I think I need to see a rheumy but last doctor said we needed to wait and see how symptoms progress before getting a referral. (I'm American but live abroad and the process is a bit different here). I know this isn't the place for a medical diagnoses but I'd like to know if anyone here has these symptoms as it would help me figure out how to approach the next doctor I see and whether or not to push to see a rheumatologist. My first symptom was a rash that developed on my face back in December. It is one half of the distinctive butterfly rash: Over the bridge of my nose and down the left side of my face but not on the right side. A few months later I developed stabbing pains in my chest along with low grade fever that lasted for ten days. Blood tests determined I had leukopenia and elevated inflammation markers. I also developed persistent mouth ulcers. After two weeks everything settled and I was back to normal with the exception of the ulcers and rash, which both persisted. Last month the stabbing pain in my chest returned along with the weird fever. This lasted for four days. I had a ECG which came back normal. Everything fine for 1.5 months when I suddenly developed extreme fatigue and muscle pain in my legs about ten days ago. This is now ongoing. The rash (which briefly went away) has returned as well. Doctor has said that the stabbing pains could have been heartburn but they came with the low grade fever (seem to be related) both times which leads me to believe it might be something else. Does anyone here have any advice? I know lupus is the great imitator and I have considered other autoimmune conditions but several of my symptoms seem to be exclusive to lupus. Any suggestions on how to approach docs and what bloods to ask for? Thanks.
Senior Contributing Member
Registered: 1419730148 Posts: 1,002
Hi, Stephjs81. Has your doctor run any blood tests? What is his/her tentative diagnosis (besides heartburn, which seems a bit odd to me)? How has she/he been treating your symptoms?
Without knowing any of that, my advice would be to avoid sunshine (even through windows) and florescent lights. If you do have lupus, exposure to either could trigger a flare. If you don't have lupus, no harm done.
Registered: 1490230191 Posts: 215
Yes, it seems something autoimmune could be going on. I think sometimes you just need to advocate for yourself.
Did they run an ANA? Not that always, but often it is positive in autoimmune conditions. I think doctors often want to write things off to more common conditions. But at minimum running an ANA seems appropriate. I was "lucky" in that I had a symptom often seen in connective tissue diseases, so my dermatologist ordered an ANA. I wasn't even thinking about it at that point. Can you see a dermatologist for your rash?
Senior Contributing Member
Registered: 1418247040 Posts: 3,497
Does anyone here have any advice? I know lupus is the great imitator and I have considered other autoimmune conditions but several of my symptoms seem to be exclusive to lupus. Any suggestions on how to approach docs and what bloods to ask for? Thanks. Good advice from both that responded, however, I don't see your symptoms being "exclusive' to Lupus.
A person with 4 of these 11 conditions may be classified as having
lupus. These conditions may be present all at once, or they may appear in succession over a period of time. 1 Butterfly ( malar ) rash on cheeks Rash on face, arms, neck, torso (discoid rash) Skin rashes that result from exposure to sunlight or ultraviolet light ( photosensitivity) Mouth or nasal sores ( ulcers), usually painless Joint swelling, stiffness, pain involving two or more joints ( arthritis) Inflammation of the membranes surrounding the lungs ( pleuritis) or heart ( pericarditis) Abnormalities in urine, such as increased protein or clumps of red blood cells or kidney cells, called cell casts Nervous system problems, such as seizures or psychosis, without known cause Problems with the blood, such as reduced numbers of red blood cells ( anemia), platelets, or white blood cells Laboratory tests showing increased autoimmune activity (antibodies against normal tissue) Positive antinuclear antibody ( ANA) test __________________ When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies.