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· Registered
2,872 Posts
Welcome to the forum ! :)

The time after diagnosis can be very confusing despite the relief of having an explanation for the poor health. The first thing is get an idea of how you are being affected by lupus, because each person's lupus is slightly different and there is a huge difference between those who are not so severely affected and those who have major organ involvement.
Obviously, symptoms are the main indication and might be the only ones but there are other possibilities such as kidney problems which might not be evident.

There is an overwhelming amount of information available and a lot of it won't apply to you and probably never will. The more difficult cases are usually described. So don't panic and imagine the worst for yourself.

I suggest getting your test results and learning to understand them. You can also check that all the essential testing has been done. Sometimes very basic tests like urine can can be omitted. When you are well informed you will be better able to talk to your doctor - good doctors appreciate informed patients.

Most of our members who are already diagnosed have ongoing problems or new ones, or haven't responded so well to the medications, so they are not typical of the lupus population in general. Those who are living well with their symptoms well controlled do not usually post regularly on forums because they have no problems.

Let us know how we can help you. There is a huge amount of good information about everything to do with lupus and lots of support and understanding.

Have you been started on any medicines?

I'll be looking out for your posts ! :)

Bye for now

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