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StephanieR
12-08-2013, 11:37 AM
I hope someone might ease my frustration. I currently present with almost every hallmark symptom of lupus... HOWEVER, my family doc will not test because what I see as the butterfly rash, he says can't be because it doesn't extend all the way across my cheeks. But the bridge of my nose always looks sunburned. To make matters worse, he's convinced that without that visible marker, it "most likely" isn't lupus therefore doesn't warrant testing!!! I know that sounds ludicrous, but it's true. Please, any info is so appreciated! ♥

steve.b
12-08-2013, 06:02 PM
hi steph, it is accepted amongst sufferers that not all of us get the butterfly rash.
i am one of the people who has never had the rash.
and i have had lupus confirmed for 4 years, and suffered many years more.

Mica
12-10-2013, 12:26 AM
Get a second opinion, the fact that he won't even bother with the tests says you need a doctor who will listen to you.

Saysusie
12-14-2013, 06:36 PM
Goodness..Not another uneducated, uninformed, ignorant doctor. These guys just make me weary!!!
By all means, get a second opinion. My Butterfly rash did not extend to both cheeks, it was mostly on the bridge of my nose and just a bit on the right cheek only. That was enough for my doctor to suspect Lupus and to send me for further testing.
As Steve mentioned, many Lupus patients NEVER get the butterfly rash. It is only ONE of the 11-14 criteria listed for a Lupus diagnosis and patients are not required to have all of the criteria. I believe that 4 of the 11/14 are all that is necessary and those four DO NOT have to include the butterfly rash. And the criteria for the butterfly rash states that it "may" extend across both cheeks. Meaning, it does not have to!!
Perhaps you can take the criteria for diagnosing Lupus to this doctor to educate him and then demand that he run the appropriate tests in order to determine if you do or do not have Lupus.
Here are the 11 criteria (remember, you need only have 4 of the 11)
There is no single blood test for diagnosing lupus. Systemic Lupus Erythematosis (SLE) is diagnosed using 11 criteria.

1. Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and may spread across the cheeks

2. Scaly rash, called a discoid rash, which appears as raised, scaly patches

3. Sun-related rash, which appears after exposure to sunlight

4. Mouth sores, which are usually painless

5. Joint pain and swelling that occurs in two or more joints

6. Swelling of the linings around the lungs or the heart

7. Kidney disease

8. A neurological disorder, such as seizures or psychosis

9. Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)

10. Positive antinuclear antibody tests, which indicate that you may have an autoimmune disease

11. 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



I wish you the best of luck.

Peace and Blessings
Namaste
Saysusie

steve.b
12-15-2013, 01:33 AM
Goodness..Not another uneducated, uninformed, ignorant doctor.......


and the sufferers all go

amen.

LindaJ
01-05-2014, 07:43 PM
Do you have fever, feel exhausted, have any joint aches??? These are other signs too that you could point out.