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Positive ANA: What might be the cause?
Autoimmune Diseases | Last Active: Sep 26, 2023 | Replies (94)Comment receiving replies
Hello, I am new to this group and would like to share my story. Maybe someone here has an answer, or at least an idea what my next step should be. I have been in pain for several months (hands and feet, also pins and needles), get worse at night. OTC painkillers don't help as well as prescription ones (gabapentin, amitriptyline, Robaxin). I first thought about RA as my mom has it so got tested for RA panel. ANA is positive, the rest is negative thus it is not RA, per my providers. ANA cascade test: ANA positive, the rest negative thus it is not autoimmune, per my providers. All other tests (cbc, bpm, vitamins, hormones) are normal. Pain is slowly getting worse and now not just feet and hands but also arms and legs hurt. Pain doesn't get worse or better because of certain activities (or inactivity). I spoke to three doctors (all internal medicine). One told me it was nothing, just probably fibromyalgia and gave me amitriptyline that didn't work. The second one told me it was nothing because healthy people often have positive ANA and my pain will go away if I take ibuprofen. The third one simply told me not to worry about it. I asked all three for a referral to a rheumatologist but non of them saw a reason for me to see a rheumatologist, or any other specialist. So here I am, trying to convince myself that it is nothing and my pain is nothing to worry about, as recommended by my providers:-)
Replies to "Hello, I am new to this group and would like to share my story. Maybe someone..."
Could you ask your primary care doctor to order an EMG? I'm not a doctor, but these symptoms could be peripheral neuropathy. I developed sensory and motor peripheral neuropathy after the Covid vaccine. My ANA level increased 4-fold at the time my neurological symptoms were peaking. The data suggest my nerve damage was the result of an autoimmune reaction triggered by the vaccine. I am slowly improving.
@kaprizzz
Most definitely see a rheumatologist!! I can't believe docs won't give you a referral!! That's disturbing. Maybe call your insurance company and tell them what is going on.
@kaprizzz Welcome to Mayo Clinic Connect! Everyone on here are looking for answers while they help others with tips and help. Please don’t say that you’re convincing yourself that it is nothing. It IS something and you deserve answers and help. The doctors (internal medicine) who didn’t know what you had and wouldn't give you a referral are, unfortunately, common in health care. Can you go to your primary care doctor and ask for a referral?
You might also try calling one of these hospitals and asking if they know of a rheumatologist near to you
https://health.usnews.com/best-hospitals/rankings/rheumatology
The Mayo Clinic has a group of hospitals in their care network. Hospitals that have access to the best that Mayo has to offer. The website is: https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
Please don’t give up! Will you keep me informed of what you learn?
Precious Kaprizz, It is so frustrating. I am on my 2nd Rheumatologist. I have an elevated C-reactive protein, Sed rate, ANA, DSANA, etc. and I cannot get a diagnosis. I've asked my other doctors about this. They say it's hard for a Rheumatologist to diagnose you. All these levels have been elevated since Covid last year. I have the symptoms of Systemic Lupus, no diagnosis. I also have fibromyalgia. I ache, hurt and am sore all over most days with that & fatigue. It's like having the flu. I have bilateral osteoarthritis and degenerative arthritis in the spine. Some days are incredibly painful. You may have Fibromyalgia as one of your doctors said. Some doctors brush off pain with Fibromyalgia and it's frustrating as it can be debilitating. Did your primary palpate all of the trigger points for fibromyalgia to diagnose you? Some doctors do not take Fibomyalgia seriously. I would press the issue about a Rheumatologist. I'm not understanding the lack of a referral for you. BUT, with that said, if you go to a Rheumatologist you may not get a solid diagnosis like me, BUT, they did put me on Plaquenil low dose which helped greatly. Heat Packs, hot showers, rest, Voltaren Gel, soaks in Epsom Salt and occasional Flexeril (Prescription muscle relaxant) get me through the day. It's important to try and keep moving or you will get stiffer. The Fibro & Arthritis are painful and I have done my research. I would ask to have a complete thyroid panel as well. I am so sorry. I am praying for you. I understand your frustration. Hugs....
Ugh!!! You are not alone. But my PC did send me to a Rhemy who said well its
Not Lupus so go away. What i do have is HSD . I am hypermobile and my pain is all over the place and no causation can be found. This is the only diagnosis that fits after 161/2
Years of trying EVERYTHING, now i will accept amd learn to do what i can- and pull back when i must. NOTHING has helped accept being in so much pain. I take opiods for that.
You can go to many commercial labs and get a HLAB27 test. Also, please reserch Sjogren's Syndrome. It has many faces.
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I know it’s very frustrating! I’ve gone through that as well, but eventually found an excellent rheumatologist. Keep advocating for yourself because it takes many doctors to fill in the blanks. It was my ophthalmologist that diagnosed my uveitis and then did bloodwork. I was HLA B 27 positive . Which suggests spondylitis. She is the one who referred me to the rheumatologist.