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TRCSC
New Member


Date Joined Feb 2015
Total Posts : 4
   Posted 2/10/2015 3:41 PM (GMT -6)   
I'm not diagnosed yet. Blood work is still out. For a while my old Neuro thought I had MS, but I wasn't getting any lesions on my MRIs. Now I have a new Neuro and he started from scratch basically. But this neuro is leaning toward Lupus. I'd known that Lupus and MS are similar for a while but always ruled it out because of the butterfly rash.
Now, as it turns out, he showed me pictures of other rashes that look very much like skin issues I have. I always assumed, since I started gaining weight after a car accident, that it was 'chub rub'.
How many of you have lupus but don't have the butterfly rash? I get red and splotchy, but it doesn't look like the pictures I've seen.

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 2/10/2015 3:54 PM (GMT -6)   
Lots of people get Lupus without the butterfly rash.

There is no single blood test for diagnosing lupus. Systemic Lupus Erythematosis (SLE) is diagnosed using 11 criteria. IF you have 4 out of 11 it is likely you have lupus.
-- Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
-- Scaly rash, called a discoid rash, which appears as raised, scaly patches
-- Sun-related rash, which appears after exposure to sunlight
-- Mouth sores, which are usually painless
-- Joint pain and swelling that occurs in two or more joints
-- Swelling of the linings around the lungs or the heart
-- Kidney disease
-- A neurological disorder, such as seizures or psychosis
-- Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
-- Positive antinuclear antibody tests, which indicate that you may have an autoimmune disease
-- Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

TRCSC
New Member


Date Joined Feb 2015
Total Posts : 4
   Posted 2/10/2015 4:02 PM (GMT -6)   
Thanks for the response. I'm waiting for the blood tests. He did 16 tests, and most of them are to screen for Lupus. I'm still not sure what's going on or what to think about all of it. At first I thought he was just testing me for everything to see what stuck. But after reading up on each one, it's clear that the majority point back to lupus.
I've found other pictures of the discoid rash and that looks like what I've got scattered sporadically across my body. Mostly my one arm, chest, and back. And there's this other 'rash' that never goes away on my leg. Sometimes it flares up but even when it's gone it isn't really gone. But that doesn't seem to fit any of the pictures I've seen.
I've been researching a lot since he showed me the pictures of the rash. Some of it fits, but I'm just not sure.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 2/10/2015 4:17 PM (GMT -6)   
A neuro is NOT the expert on Lupus. You would need to see a rheumy to get a more definitive diagnosis and treatment. (Careful, some Drs think they can treat outside of their specialties but it isn't usually the best thing for their patients.)

To find a good Lupus-aware rheumy, I always suggest finding your local chapter of the lupus org www.lupus.org - see which local Drs are active with the local chapter, these are the Drs who are most up-to-date on diagnosis and treatment of Lupus and similar connective-tissue auto-immune diseases.

Best wishes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

TRCSC
New Member


Date Joined Feb 2015
Total Posts : 4
   Posted 2/10/2015 4:26 PM (GMT -6)   
Well when I went to him, it was a 2nd opinion on MS. He's the specialist for that in the area. I had no idea lupus was even gonna come up.
Although, with his bedside manner, getting a new specialist wouldn't be the worst thing.

tired of lyme
New Member


Date Joined Feb 2015
Total Posts : 1
   Posted 2/16/2015 6:20 AM (GMT -6)   
Where can I find pics of lupus rash, some say Lyme but others say
Lupus so very confusing. I am always having pain, loss of weight,
Tremors under my skin, so scared of the UNknown.

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 2/16/2015 1:13 PM (GMT -6)   
I have never had the butterfly rash with Lupus! I also agree with Lynnwood that you probably need to see a rheumatologist to diagnose lupus for sure! As I am sure you know Lupus is the great imitator… Meaning mimics many different autoimmune diseases that needs a rheumatologist trained in lupus to be able to diagnose it properly!
Amy
Lupus Moderater
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