are there any Lupus sufferers here?What were your symptoms?

[w8liftinglady]

After the myriad of tests they've done on me,it now(unofficially) looks like I have lupus.Elevated ANA,speckled positive,memory loss,seizures,fatigue.I never knew lupus acted this way(I always associated it with a rash)Anyone else have it?Can you tell me a little about your experience?

[marybourg]

1. The Lupus Book by Daniel Wallace, M.D. 3rd (or later) edition

is a good source of information. It's a very complex and varied illness. Knowledge is power. I hope you'll feel better soon.

[w8liftinglady]

2. thank you-I ordered it today.The neurologic effects are the most disturbing to me

My memory is shit.I lose track of my thoughts in mid sentence,and have seizures.I hope there's something that will help me.

[Warpy]

3. Lupus affects body systems differently in each person

and the symptoms you described are certainly consistent with it.

The good news is that they're getting better and better at controlling the disease. The bad news is that if you've got it, you'll always have to take care of it and some of the drugs you'll be taking from time to time are ugly.

Lupies are in one club that doesn't want any new members, but there are a lot of us who have been living with it for a very long time.

[w8liftinglady]

4. Thank you-believe it or not,it feels good to have a "name"

and know I'm not crazy.

[Warpy]

5. I know, when I was diagnosed I walked out of Mass. General

and onto a busy street and thought about all those years my mother said I was just lazy and yelled "WRONG AGAIN, MA!" and hoped she heard me in Florida. All of that particular bank of "mommy tapes" was silenced forever.

Then I started to read and depression set in after, but it doesn't last forever.

I got sick when I was barely into my teens and it took 14 years to get a diagnosis after it became clear something pretty drastic was wrong. It took a little longer to get appropriate treatment, but I'm still here.

[DUgosh]

6. Speech problems

Cognition, no attention span, couldn't watch anything on tv accept old sitcoms I had seen already. Could'nt read. I had problems with words. My sentences sounded like. "The living room needs mowing" "The yard needs vacumning" I would say it and think that doesn't sound right but I couln't correct it. I've had some discoids (raised circles) appear on my waist and shoulders over the years some even in my teens. Sometimes when I'm really tired I get a butterfly cast over my face. I have some skin discolorations on my face but it doesn't look like what I imagined a butterfly rash should look like. It's almost healty looking. But the good news is that you can feel better. Lupus flares and it ebbs. What doesn't kill you....

[mopinko]

7. i resemble these remarks.

i have been doing pretty well on lyrica (have fibro also, like many lupies) but recently sinking again. the comment that i resemble the most is about the shadow of a butterfly. after more than a year of a tingly-itch, and some slight swelling and discoloration, it has finally become noticeable to others. funny that it is only on one side, which is what really makes it obvious. if it was symmetrical, i would be the only one who could see it, i think.
guess i will have to break down and see my rheumie. blech.