Connect
← Return to Lupus or not Lupus?
Discussion
Comment receiving replies
Hi. I'm new to this site and read your post. Immediately, I could see everything you went through as exactly what I went through so wanted to tell you what the result was for me. I, too tested on and off for positive ANA. So, Doctors did not consider lupus (SLE) for many years. I had almost every symptom of systemic lupus but the Doctors argued that I could not have lupus with a negative ANA. One day I decided to attend a lupus support group and listening to the members, I was convinced I had lupus. Finally, my new Therapist heard me out and suggested I see his good friend, who happened to be considered the very best Rheumatologist in Atlanta, GA. He was able to get an appointment for me with Dr Gary Myerson. Dr Myerson examined me and said he was pretty certain I did indeed have lupus. He explained that although most Doctors use ANA as their most frequent screening test for lupus, many patients NEVER test positive for ANA, even though they have lupus! He ordered a more specific (and more expensive) test called "double-stranded anti-DNA autobodies" test and the results showed high titers for systemic lupus. After ten years of going from Doctor to Doctor, never finding an answer, and having been called a hypocondriac by one, I finally had the correct diagnosis and was put on Plaquenil which, after about six months had me feeling much better, less fatigued, and reduced the malar, or "butterfly rash" on my face. I am very grateful to this Rheumatologist as I believe he saved me from permanent kidney damage and other possible complications of lupus. Just three years ago I lost a good friend, who passed away at 58 years of age from Systemic Lupus. Call me blessed.
Replies to "Hi. I'm new to this site and read your post. Immediately, I could see everything you..."
Hello @djanthony, welcome to Connect. Thank you for posting what you found to help you and alerting others with similar symptoms.
I’m a DES baby. Sick my whole life although I had a very active life with various stints in bed. I was diagnosed with Lupus even though my ANAs kept coming up negative.
I’ve been diagnosed with polio as a kid, epilepsy, MVP, TIAs, autonomic disorder, preeclampsia, lupus, fibromyalgia, arthritis, raynaud’s, small blood vessel disease, OSA, polycystic disease, precancerous cervical, DDD, neuropathy, osteoporosis, IBS, anemia, precancerous CC, parkinson’s, and myasthenia gravis. I probably forgot others. Some have been ruled out and some not. I mention these so you can see the symptoms I had.
When I first went to a rheumatologist after a car accident he took me off a beta blocker and put me on prednisone and some kind of a malaria type drug. It got me out of bed after being exhausted for months. I no longer had lupus symptoms and he said that it had been drug induced lupus symptoms from the beta blocker.
Took me another 20 years but I got a new neurologist after moving and she tested me for MG and antibodies were in my blood. When I asked her how long I had it, she said my whole life. Took 60 years to get a correct diagnosis as they didn’t have the technology and experience when I was younger.
So don’t give up, keep searching, don’t get discouraged, and treat the symptoms so you can keep functioning as best as you can. If your doctor doesn’t help you, keep looking until you find one that does.
Connect
Thank you! After awhile I think you start questioning if it's all in your head but your body keeps telling you over and over something is really wrong. My endocrinologist, the day after I posted that basically threw her hands up and said ok, yes there is something more to this that we weren't finding and gave me a referral to a rheumtologist at KU medical center who specializes in some of the more 'obscure' autoimmune. I will discuss that test with them. Thank you for suggesting that, but also for reminding me I am not alone in this.