I'm Getting Tested For Lupus

Heather,

i'm sorry to hear you've been feeling so poorly. I would be surprised if you get a diagnosis on the first visit -- unless your case is highly unusual. Most folks go through years of tests and waiting before a definitive diagnosis is made.

The good thing is that most good rheumatologists will treat your symptoms until a diagnosis is determined. Here's hoping you have a good one!

Hugs,

~lauren

I am so frustrated with my doctors. I have been to so many doctors and I am no closer to a diagosis. I've had 2 pheumatoid profiles that have both been positive. My white blood count is very high and I feel like i've got the flu all the time. I have a reoccurring rash on my face, neck, and groin area. They did a biopsy and I am waiting for the results. Why can't they tell me if I have lupus or not? The rheumatologist has mentioned sjogrens disease and behcets syndrome but he can't give me a definite diagnosis of lupus or the other two mentioned diseases. I have constant fever, headaches and not to mention I have had unexplainable and uncontrollable seizures for 3 years now. As you can tell, I am so frustrated and confused. I did have one drug that helped my seizures but it lowered my platelet count so much that I had to be hospitalized for petechiae rash. I was a middle school teacher and had to retire due to my seizures and now I am confined to my home. I just want to feel better. Does anyone have any advise for me? I have not been started on any treatment yet except just topomax for my seizures and pain medication for my aches and pains of migraines and joint pains and of course, I am on antidepressants and anxiety meds and meds for mitral valve prolapse. Any encouraging words out there?

Dear bdennard, you are more than your symptoms and it's unfortunate that you are isolated in your home. But if you have to be home, there are ways to make being inside very enjoyable and comforting. If you have a friend with designer flare they can help you make your home more like an oasis.

I have SLE, I have my good days and bad days. I have been seeing a pain management coach, this has helped me more than I had anticipated. I often bathed in my pity pool, but that was no way for my children's mother to behave or to pass along victim characteristics.

I work through each days aches and pains. I have embarrassing rashes all over my body and often have unexplained swelling that aren't at the joints. I have said to the hell with it and I will wear what I like, not just wear something because it hides my rashes. People ask me if I have hickies on my neck...I just chuckle and tell them I have Lupus, that usually stops their judging.

I'm empathetic to you that you have so many medical problems, but remember when you have a good day, embrace it, cherish it, and push your limits