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Hi Suzanne and welcome :)

I'm not one of the best on advice for rheumies appointments but wanted to say hi and do my best.

Your list of symptoms definitely warrants further investigation and many, if not most, of your symptoms are very typical of lupus (or can be connected to it) or another auto-immune disease.

If you do have lupus, getting effective treatment can make a huge difference to your quality of life and to disease activity.

As most of us suffer from white coat syndrome to one degree or another, I think that making a list of your symptoms and history is very useful. If you have had comments or referrals from other docs mention them. It gives more credibitility - this is not just in "your" mind. Our symptoms can be so varying that even a good doc can have difficulty piecing it all together so learning a little about the disease and its symptoms can be helpful. You can begin to do that by looking at the diagnostic criteria pinned at the top of "not yet diagnosed"

http://www.thelupussite.com/forum/showthread.php?t=33123

Try to keep away from ever saying to a doc "I think I have..." it doesn't tend to go down well.

If you have joints that swell visibly or rashes, you MUST take photos of them and take the photos along with you. They are often very helpful in diagnosis and, of course, always disappear on the day of the appointment.

It is highly unlikey that you will walk out of a first appointment with a diagnosis. Doctors are very careful about giving a lupus diagnosis for many reasons. One being that it is very difficult for us, as patients, to then get any form of insurance after. He or she will most likely order a whole new batch of blood tests as they can do far more specific ones which can perhaps determine exactly which disease you might have.

If you do get a diagnosis of lupus you need to know that today's treatment options have greatly improved. It is a serious disease and must be treated but when treated it rarely decreases life expectancy and most people will go back to leading pretty much normal lives once their treatment is well balanced. You need to remember that the members who post frequently here are usually "newly diagnosed", "not yet diagnosed" or the more severely affected. Many others are out there too busy leading their lives to come and post here.

The first drug that most people are put on is called plaquenil. It is a very safe drug with few or no side effects. It takes a long time to kick in (3-6 months, sometimes as much as 12) but is used as a baseline drug and is disease modifying. That means that it will reduce the frequency and severity of flares and therefore the severity of the disease.

If that drug isn't enough, others can be added and many of us (for whom plaquenil is not enough) are on finely tuned cocktails of drugs which give far less side effects than being on massive doses of one thing.

I hope that helps a little, bye for now,

Katharine
 
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