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Posted By : Violet Thomson - 2/17/2017 2:23 PM
I've read the "start here" post about lupus. But I want to know what you all think.
I was diagnosed with Lyme, etc. three years ago. Despite treatment again and again, I never get any better. I had a + ANA test last week. No other abnormalities. I know lots of people (epscially with Lyme) get positive results from that though. I don't have any other abnormalities. No white or red blood cell problems.
My symptoms are bad, bad fatigue, brain fog, shin bone and joint pain especially at night, tinnitus, costochondritis, muscle aches, muscle twitching, pain on the bottom of the feet (which has gotten better but has not fully resolved). My hair has occasionally fallen out (not horribly but it was gross and it resolved with biotin).
I did get four canker sores on the infused of my mouth two weeks ago during a cold...not sure if that's like lupus or was caused by the cold... I don't know.
Doctor ordered a double stranded DNA test. And I'm seeing an NYU Rheumatologist familiar with Lyme soon in March.
Just confused because Lupus manifestations and blood work seem to be highly individual. I know one person with lupus and she supposedly got diabetes and high blood pressure and the butterfly rash from it, but I'm not sure if that's correct and I know she has more problems too.
Any suggestions?
Thanks,
Violet

Posted By : Lynnwood - 2/17/2017 2:55 PM
Lupus is called the disease of 10,000 faces because given a group of 10,000 patients, we can all have different symptoms & different lab work. SO yes, Lupus is highly individual and difficult to diagnose.

Good that you are seeing a Lyme-aware rheumy - do you know if the rheumy is active with the local chapter of www.lupus.org? That is how I generally tell people to see if their rheumy is interested in Lupus - not all rheumies are.

Lupies can definitely get high blood pressure and butterfly rash -- if your friend got diabetes from Lupus it would be rare, but it could be that her diabetes came from side effects of medications. (Adult diabetes type 1 is an auto-immune disease in and of itself.)

Hang in there till your rheumy appt, and let us know how if goes or if you have any other questions we can help with!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Violet Thomson - 2/17/2017 7:25 PM
Apparently my ANA was "slightly abnormal" not high. Does that mean something? That lupus is unlikely? I'll get the lab copy on Monday.
thanks.

Posted By : Lynnwood - 2/17/2017 11:39 PM
A positive ANA does not mean you have Lupus or another auto-immune disease. It simply means something is going on that needs investigation. And you have a rheumy visit scheduled to do that investigation. Lots of tips in Lupus 101 about how to get ready for that appointment!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

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