← Return to ANA Titer 1:1280 pattern homogeneous and speckled o/w negative work-up

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@slkanowitz

I’m both a patient with 6 autoimmune disorders and a retired/disabled healthcare provider. I have seen this situation many times and experienced it firsthand myself. It took me a decade to get my first diagnosis of lupus with an ANA of only 1:40. I was lucky that wasn’t ignored after 10 years of numerous classic signs and symptoms. I’m going to suggest a few other tests that may be helpful in ruling out some additional causes of fatigue as well as my perspective on your frustrating struggle. Some people with lupus have no other antibodies than ANA initially. It can take months to years for the whole picture to become clear. A good doctor should consider signs and symptoms, not just lab values. Treatment should be offered even if the diagnosis is unclear. In addition to the labs you have had thus far, a few other things to check are anti thyroid antibodies for Hashimotos thyroiditis (can cause hi ANA, fatigue), thyroid hormone levels, Epstein Barr panel for chronic EBV syndrome ( this MUST include an early antigen (EA) level for chronic viral activity.) This virus causes mono and usually goes into remission but stays active in some people causing chronic fatigue and is thought to trigger lupus in some people. Skeletal muscle enzymes (CK, aldolase) should be measured to rule out myositis, muscle inflammation. I would suggest reviewing the symptoms of lupus and check marking any and all you have had such as sun sensitivity, rashes, hair loss, etc. Be sure a urinalysis has been done. There is a more sensitive test called Avise CT that a rheumatologist or even PCP can order that may turn up clues for all the common autoimmune diseases. Then, be sure to have some of these things repeated at 6–12 month intervals since new clues may emerge over time. Clearly something is going on and you will need to be your own researcher, advocate and press for what you need. There are many OTC products that help with dry mouth. I use Spry spray (Amazon). I do hope you find answers and help soon! Your symptoms are valid and you will get help!

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Replies to "I’m both a patient with 6 autoimmune disorders and a retired/disabled healthcare provider. I have seen..."

@slkanowitz - Hello. Thank you for this information. All the tests you mentioned above except the skeletal muscle enzymes and EBV to include EA have been completed and normal/negative. I will have my internist draw those. Will not bother mentioning to Rheumatologist since was matter of fact that he does not know why I am having what he states are atypical symptoms after ruling out sjogrens, lupus and CTD. He did start me on pilocarpine which I am taking twice daily now and will max at 3 times a day. A small amount of sputum is being produced only. My gums are receding from my dry mouth. I carry around with me all the dry mouth products and use lozenges. Since I have associated TMJ pain xylitol gum is a no for now. I will gather enough strength to advocate for myself again. Just an exhausting couple of months and trying to regroup with a new starting point. I am just so frustrated. Thank you again for the information. Will write in my log for future follow up testing.