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Kimstph
Regular Member


Date Joined Sep 2014
Total Posts : 55
   Posted 9/28/2014 9:03 AM (GMT -6)   
I'm a newbie (not actually diagnosed). My ANA tested at 1:320 and I have alot of symptoms I see discussed on this forum and a family history of lupus.

I am also a breast cancer survivor so a lot of my symptoms I have I thought were "chemo brain". Now I see there is also a "lupus brain". All I know is that I have NO brain.

Anyway.... I had a grand mal seizure in July of this year. It was terrifying because I thought my cancer had metastsized to my brain and I would be dead in 3 to 6 months. However, EEG, CAT scan and MRI were all clean. The doctors said they didn't know why I had the seizure.

Now my ANA score came back high and I'm being referred to a rheumotologist. I think I will be diagnosed with lupus (maybe not...).

My question is this: if I do get diagnosed with lupus and get on lupus meds, will I be able to go off the seizure medication? I'm thinking my seizure was because of the lupus.

I am not in the medical field so I am just guessing. I know medical doctors cringe when patients use the Internet and self diagnose. When I see the rheumatologist I will just give her my symptoms without trying to tell her what I have - lol.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 9/28/2014 9:29 AM (GMT -6)   
Not that many of us have seizures (I've seen it reported that less than 5% of lupus patients have seizures) -- I have no idea if any new meds will effect the meds you are currently on. So many factors will come into this decision that I suspect even the Drs would be guessing.

When do you see the rheumy?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Kimstph
Regular Member


Date Joined Sep 2014
Total Posts : 55
   Posted 9/28/2014 11:34 AM (GMT -6)   
I just got referred to the rheumy on Friday so I will call tomorrow for an appointment. This is all very new as I got the phone call on Friday that my ANA was high. I, of course, started searching the Internet and it was as though the discussions about lupus was describing my life. I'm afraid to hope - have I finally got an answer after all these years?
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