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diagnosis_unknown
6.13.07, 7:31 PM
Hi my name is Amanda. For about 2 years now I have been having frequent pain and swelling in my joints. It started off only in my feet and by the end of the day I wouldn't be able to walk on my own. One day I woke up with extremely bad swelling in both ankles, knees, wrists, and hips. Along with it i had a terrible rash on my back and stomach. The ER doc suggested Lupus and urged me to go to my family doctor immediately, which I did. But not before getting online and researching the disease. I was shocked to have almost every symptom on the list including the infamous butterfly rash which I thought was just a rash from the sun since I have such fair skin. I've had nose ulcers which I thought were just little zits inside of my nose. But I have them for months on end and they can be very painful. I get exhausted from just sitting in the sun usually resulting in a headache for the rest of the night. I've told my doctor all of this and she tested my ANA and it came back negative so she dropped it. Now it seems like she isn't even listening to me. New symptoms have developed recently which are re-occuring yeast infections and abnormal vaginal bleeding. I was wondering if anyone else has had this problem and should I associate it with the possibility of lupus? It's sad but I don't even want to go to the doctor anymore with my new problems in fear of her turning me away. I know it takes time to get a diagnosis of lupus but is there anything I can do or meds to get put on in the meantime? And if anyone knows the name of a good doctor I would really apreciate the help. I don't know what to do anymore or if I should just trust the doctor and sit back and deal with this pain. Any words of advice or encouragement would help a great deal. Thanks for your time.

Annie
6.13.07, 7:53 PM
I know it's hard, Amanda, but try to hang in there.

Is there any way you can convince your GP to give you a referral to a Rheumatologist? Most people are diagnosed clinically rather than through the result of one test. It's not completely unheard of to have a negative ANA when you have Lupus.

Autoimmune diseases share a lot of symptoms, so even if it isn't Lupus, (but with a butterfly rash, that's pretty specific) it sounds like one of the AIs... RA, Schleraderma... there are a lot of them. A good rheumatologist should be able to sort it out for you and set you on the right path.

Some suggestions:
If/when your rash flares up, get someone to take a photo of it. They come and go, as you probably know. If you have a photo, you can just hand it to the doc.

Write down every symptom you can think of, no matter how minor it may seem. The more you can tell them, the better chance you will have of getting their attention. It's really helpful to keep a journal of some kind, just a brief line or two every day to track what's happening. Then take it with you to the doc so you don't have to try to remember it all.

Stay out of the sun! If you have to be out in it, cover up as much as you can. Hat, long sleeves, long pants. Sun screen. Every sun exposure makes you a little more sensitive. It's a cumulative thing, so don't ignore this one until you find out what's up. This could save you a lot of pain down the road.

I know there's more, but I'm coming up blank right now. I'll be back later to check back. Please try not to be too afraid. It's serious business, but you can live a fairly normal life once you get a few people in your corner.

It's good to meet you, I'm sorry it is under these circumstances, tho. Please take care, and feel free to ask anything that may be on your mind.

sabine69
6.14.07, 7:57 PM
Dear Amanda - I don't have Lupus, but I have Rheumatoid Arthritis (one of the autoimmune disorders or AI that Annie mentioned above). It took six months for me to get diagnosed ... the funny thing with me was that my ANA came back positive but the doctors were so sure that there was nothing wrong with me that both my GP and the first rheumatologist said the ANA was false positive. It was so frustrating, I can't tell you how many times I cried not only from the physical pain but also the frustration. One of the obstacles I had was that no one had ever had an AI in my family, so the doctors found it hard to believe that I had one. So you might want to ask around your family if anyone has (or in the past had) an AI disorder, as they tend to run in families. If your GP will not pay attention to what you are saying I would strongly recommend that you get another GP and it would be a good idea for you to see a rheumatologist. Rheumatologists don't just work with rheumatoid arthritis but also with other AI disorders. Anyway, Annie gave you really good advice in terms of keeping a log of your symptoms and have someone take photos of your rashes. Getting the diagnosis is only a baby step, believe it or not. Hopefully you will have a strong support system (including us) through your journey. Good luck! Chris