Lupus 20+ years!

by annmac331


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annmac331  



, 52 minutes ago
To: Gina 52 and anyone else this might help
I've had lupus for over 20 years and probably expeienced all of the symptoms you all mentioned at one time or another.  I, too, was really scared when this all started - and frustrated with my doctors for their inability to make a diagnosis.  It's really hard to live with these problems and not know what's wrong!  Maybe my experiences can help somebody cope a little better - I hope so.
     I started out with joint pain, etc. I had a positive ANA but other tests were normal, and they said I probably had MCTD (mixed connective tissue disease). Symptoms came and went (typical of lupus) and blood work was inconsistent - sometimes normal, sometimes abnormal - so confusing! . There's not a single test that diagnoses lupus - it's a combination of test results over time in conjunction with symptoms. Over the years I've seen a lot of doctors and  I've read a lot about autoimmune diseases - I'm no authority, but I think my experiences are pretty typical of lupus. I've had long periods of time when I felt good, interspersed with  some times when I didn't. Rarely does someone get sick and stay sick with lupus - it's cyclical.  And most people do NOT have major organ involvement!  Years ago lupus was considered dangerous and maybe even life threatening - but no longer. There are medications that can take care of just about every symptom!  And I have a pretty severe case of lupus (along with rheumatiod arthritis and many other medical problems), so I'm speaking from experience when I say - Don't panic! It's OK.  If you're like I was, you're afraid of what's going to come next - but it's not as bad as you're imagining or fearing. Really!
     I hope this is of help to someone.  Take care...
annmac331
P.S. It takes awhile for many of the medications to work, so don't judge their effectiveness too quickly.  And if one doesn't work, get your doctor to prescribe something else.  You don't have to suffer!
    

[Gina52]

All I can say is, thanks a lot!  My daughter in about 4 months from now will be an RN. She knows about this and she is not that concern like I am. I just don't want her to suffer and have pain all the time Then I'm scared for her not later on to have any complications or any organ involved. Wish they find a cure. Take care!
Gina