Here are my symptoms
Joint pain/ joint cracking
muscle pain and weakness
occasional butterfly rash
nausea in the morning/vomiting sometimes during attacks
tingling and cold fingers
fatigue
hair loss
memory problems
shaky hands/ sometimes unable to write and hold pen
insomnia and leg jerks in sleep
pain in chest and inability to breathe during attacks
head feels hot sometimes
I had four attacks –> June, August, October, and December of this year.
My ANA came back negative and my doctor says it’s not lupus or any other autoimmune. What should I do now?
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I started having lupus-like symptoms when I was about 14 when I was 15 my family doctor ran blood tests to check my ANA and it came back negative. It took four more years before I finally had a positive ANA and ultimately a positive lupus diagnosis. Autoimmune disorders are tricky to diagnose. Try and hang in there and keep reporting back to your doctor any new symptoms and if you feel like you are not getting any help with your current doctor–Find a new one! I saw a couple dozen doctors before I finally found on that was able to really treat me. Good luck and hang in there!
Some of your symptoms are not consistent with lupus. I suggest you see a good rheumatologist, present your symptoms, and let the doctor do the diagnosing. The surest way to get a doctor to blow you off is to come in having diagnosed yourself!
A diagnosis of lupus is made based on symptoms, history, a wide variety of lab tests and AFTER EVERYTHING ELSE IS RULED OUT.
For example, the joint issues could be rheumatoid arthritis. The muscle pain and weakness could be fibromyalgia or polymyositis. What you think is a butterfly rash, may not in fact be that. It could be rosacea. Nausea could be Crohn’s or ulcerative colitis, or a digestive disorder. The finger issue is Raynaud’s which can occur with lupus or on its own. Fatigue can be caused by a hundred different things. Fatigue can cause memory problems. Shaky hands could be an neurological issue, but if it is just hard to hold the pen, that could be RA. Insomnia could be a result of worry or anxiety or lack of exercise. Insomnia causes fatigues which in turn causes memory problems. Leg jerks are not a sign of lupus. The kind of chest pain you describe is consistent with panic attacks. Lupus flares don’t just attack and then go away. Lupus flares last for a while (days or longer). If you have chest pain with lupus it is because of things that develop slowly like pericarditis, myocarditis, endocarditis, pleurisy and pleural effusions. These don’t just “attack” because they have to do with fluid and swelling in the heart and lungs. And the warm feeling in your head could likewise be caused by many things. Hair loss could be from alopecia areata, poor nutrition, stress or anxiety.
So, you see, you need a good diagnositician to unravel all of this.
Now, about the ANA. 10 million Americans have a positive ANA. 1.5 million Americans have lupus. 5% of those with lupus have a negative ANA (The Lupus Book by Daniel Wallace, MD). There is no definitive blood or lab test for lupus.
Clearly, you have health issues, but I think you are barking up the wrong tree. However, you should pursue a diagnosis, just don’t start by diagnosing yourself.
Best wishes.