My Lupus Diagnosis Story...

Here is the story of how I was diagnosed with Lupus...

A little before hand...I had an unexplained "grand mal" seizure about 7 years ago(never knew at the time that seizures are a symptom of Celiac Disease APS and Lupus)
Then about 3 years ago had issues with a mass in my breast and cervical pre cancer cells from HPV, not really related but still a sign I needed to take care of myself better.

Also when I lived in Texas for a couple of years
I was having blurred vision, numbness and tingling, panic attacks, dizziness to the point that I could not move ,severe migraines, and more. I was tested then for MS but did not have it. They never even thought to test for Lupus or for Celiac Disease, which I know could have been a definite diagnosis back then.(Read Peter Green's book "Celiac Disease : A Hidden Epidemic" for symptoms of Celiac Disease)

OK now to the nitty gritty... I developed a round disc shaped sore on my nose that wouldn't heal. My doctor send me to a dermatologist. She thought it was skin cancer and did 3 biopsies, but they all came back negative. She decided I had enough skin damage on my nose to try a drug(fluoroconizole???) that I was to put on my nose and it literally peeled the skin off my nose, it was disgusting!

Well nothing got better so the dermatologist sent me to a dermatologist specialist. He looked at the sore and my biopsies and was totally confused. He decided to cut the entire sore off my nose(I still have the scar) and send it to a special lab(the biopsy labs kept saying there was no cancer just inflammation.)

He got the results back and said the lab thought the sore on my nose was consistent with Discoid or Cutaneous Lupus. Went back to my primary care doctor and he sent me to a rheumatologist.
I talked to the rheumatologist and realized that many of my aches and pains were not normal aging as I had thougtht. They ran blood tests and urinalysis and confirmed that I had Lupus.
They said it looked mild and it may only be Cutaneous Lupus. I had an ANA of 1:80 not that high and Antiphospholipid antibodies and DS DNA. Then the rheumy I had been seeing was out indefinitely, found out later he was ill. His partner took over my case. He said that I must take plaquenil and a baby aspirin each day. I researched this and found out the meds were very dangerous, I decided not to take the meds and research more.

Then the new doctor that was taking over the case said that I would need to go see him at another office that was an hour away. I decided not to continue with him and got the name of a new rheumy.
The new rheumy didn't work out , and then my neighbor gave me a recommendation of their rheumy that they liked ,so I went to see her. She is the same rheumy that I have today, she is a pretty good doctor, but has many flaws with her thinking. My highest ANA was 1:160 and I have DS DNA and Antiphosholipid antibodies, this rheumy believes from my blood work and my symptoms that I have full fledged Systemic Lupus . This rheumy offered me medications but said it was my choice whether I take them or not, and I have chosen not to. That is one thing that I appreciate about this rheumy is she gave me the choice and did not force me to take meds.

The story continues when I met Dr. Gazoni (a nutritional kinesiolgist) on one of my first posts on this blog. Once I met her I changed my diet and the rest is history I have felt so much better with this change in diet.(PS I told my present rheumy that I was going to change my diet and she said do what you want but it doesn't make a difference what you eat(mind you ,,she wrote 2 papers on Celiac and Lupus going together hand in hand!!!!)