[kathyf]

I was diagnosed with lupus 10 years ago and put on full disability because I could no longer work. Lupus seriously affected my mental capabilities. Altho they are somewhat better, I can no longer focus on something for more than @30-40 minutes and I still cannot work.
The doctor now tells me that my lupus is no longer active and altho I will always have certain test results that indicate lupus, I am essentially 'over it'.
Is this possible? How come I still have serious fatigue and focus problems?

Please respond to [email protected] with your answers.

 

[confused1]

Hi, I'm just about the least qualified person on this board so far as "real" medical information goes. But I can tell you that my understanding of remission is that all symptoms go away even in the absence of medication.

If you still have symptoms, you are still sick. That seems to me to be the logical way to understand any disease. What you describe sounds to me like active disease of some sort. Lupus, cfs, fibromyalgia, ..........you name it. Personally, my blood work has never ever supported my diagnoses. I frustrate doctors. They just look at me and tell me I can't be as sick as I say I am. Hah.

good luck, and don't let the [email protected]#$%^&* bully you
Sunny

 

[Christine UK]

Oh he sounds wonderful !

I have read that it can go into full remission in later life HOWEVER...does it ever go away fully...thats the million $ question..

how wonderful if it did..

We can all say yes we have good days,but my bad days tend to outweigh them...

 

[Katharine]

Hi Kathy,

I agree with the others. Although you can go into remission (where is it sometimes possible to stop certain meds), lupus doesn't just go away and, from the symptoms you are describing, there is still obviously something wrong.

If you are not happy with what your doctor is telling you, it is maybe time to get a second opinion.

Katharine