Who Diagnosed You and What Were First Symptoms?

Hi,

I have been a member of HealingWell for awhile in the Crohn's group. Lately, I've been experiencing some weird things, and I wanted to ask how you guys were diagnosed and what were the initial symptoms?

I've been having some joint pains in my fingers and knees, awful headaches, difficulty concentrating, fatigue, anemia, and I was recently taken to the ER with lung inflammation. I've always had face redness.... but my dermatologist always said it was rosacea.

Does this sound like it could be lupus?

I already have one auto-immune disorder, does anyone out there have something in addition to lupus?

Thank you all for your help!

I was diagnosed by my fourth rheumatologist. I had experienced minor symptoms off and on for 20 years. They would generally last only two or three weeks at a time, a couple of times a year. Butterfly rash, low grade fevers, extreme fatigue, hot swollen joints, and it's been so long that I don't remember what else. Then I had a full blown flare four years ago with more severe and other symptoms that lasted, well, it's finally tapering off.

You probably know that people with one autoimmune disease are more prone to develping another. Take a look at the Resources site on the main Lupus page. I think you'll find lots of good information about lupus there. You'll also learn a lot about lupus by hanging around here and asking lots of questions. It's an awful hard disease to diagnose and of course the first place to start is with your doctor. Take a look at the 8th post in the Recources tab. It's a great guide for all of us.

Good luck!

mimik, I was diagnosed by my third rheumy (a lot of us have had to go through several docs to find a good one). My pcp suspected lupus long before I was ever diagnosed. My very first symptoms were extreme fatigue, weakness, brain fog and generalized pain. Over time I developed joint pain and swelling, hair loss, mouth sores, sun sensitivity, rashes and other lovely lupus symptoms. Patty is right about a lot of us having multiple diagnoses. I was recently diagnosed with mild ulcerative colitis. I hope you can find a really good rheumy who specializes in lupus who can help you figure out your symptoms and give you an accurate diagnosis. Please let us know what other questions you have.

My experience was very similiar to Robin's. I had the worst case of strept, went into kidney failure. They originally thought it was post strept glomerulonephritis, turns out it was lupus. Incidentally, my brother has Crohn's disease. A really bad case, if you can say it like that. I know several people who have Crohn's disease and Lupus. I pray you find an answer soon. God Bless You, Judy

You know I had a bad case of strep throat in 2004 and after that seems to be when the new symptoms started and old ones were magnified. Very strange........

mimik81, I have come to know that NO Autoimmune problem comes alone, it always brings a family member. My husband is the one with the Lupus. His first symptoms was weight loss and vomiting, as it turns out he also has Cyclic vomiting syndrom and Fibromyligia.

Jenny,

It is not weird at all that both you and your mother have different AI diseases.  Studies have shown that AI diseases, while not hereditary in most cases, do run in families.  Not necessarily the same diseases but AI diseases in general. Whatever the inherited gene set that predisposes you it does not determine what disease you get.  Just that your immune system is vulnerable to a disruption.

These diseases are related only as far as the genes that allow the disruption to occur.

Bill