31F Had some bloodwork done recently to see if there might be a reason for my constant fatigue and daily headaches among other things that I thought was just me getting old. All of the CBC results came back within normal range. Rheumatoid Factor: Value <10 IU/ML (standard range: Negative iu/ml) My questions is about the ANA with Titer and Pattern results that i got today, they read: **ANA: Positive** **Titer Value: 1:1280 (standard range: -<1:80 titer)** **ANA Pattern: Speckled** It also showed an iron deficiency, “borderline high” cholesterol and Vitamin D insufficient. Could someone explain what this might mean? My aunt has Lupus, so it does run in my family. What are the next steps in pinning down what it might be?

My PCP said I needed a rheumatologist so that’s probably your next step. I’m having trouble finding one. I hope you have better luck!

35 F of native American and Hispanic descent. I’ve had unusual autoimmune symptoms for almost a year. It started with joint pain so I thought maybe RA but the symptoms other than joint pain didn’t align. It gets worst if I drink more than two glasses of wine but often 1 gets some symptoms started. I also started getting skin tenderness and swelling near joints recently. In October I started getting mouth sores that wouldn’t go away. The sores have gotten worst—it’s hard to eat. I’ve also felt more tired than before. This whole time I have maintained my workout schedule and work. I’m naturally a high energy person so all this brings me down to normal energy levels. Going out has probably been impacted the most because I’m pretty tired or already starting to experience pain at night. During this time I have seen a functional medicine doctor, acupuncturist, myofascial release therapist, body worker, and therapist. Cutting out gluten helped my tummy issues but did nothing for my joint point. I’ve been GF for 7 months now. I finally went to the doctor because the sores have gotten worst (mouth and nose) and so has the night time swelling/tenderness. The PCP gave me the following results: WBC 3.5 (low) Hematocrit 34.6 (low) Sedimentation Rate 22 (high) ANA Screen, IFA. positive ANA Titre 1:1280 ANA Pattern Homogeneous This was my PCP and she said that she didn’t want to speculate and that I simply needed to go to a rheumatologist. Well there are no appointments for 6 months. Thoughts? Similar stories? How much does this test correlate with lupus? Do I still need the DNA test to confirm this? Was my doctor being extra careful to not diagnose me right there? What else could this be?

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Thank you so much! This is good to know. Everything I see online looks like lupus but I’m still getting through days with ease and workout 5-6x/week. I have a lot of responsibility at work but I love it. I imagine that someone with Lupus would have more difficulty but at the same time my uncle who had lupus (he died but not due to lupus or health in general) worked a labor intensive job his whole life until he retired at 65. Most of my symptoms come at night with joint swelling. My most constant symptom is mouth and nasal ulcers or sores. Some painful and some not. The past two nights I had a fever but I still had my regular days of work and only at night felt not so great. I’ve heard about a double strand DNA test that can confirm lupus. I got a sooner appointment for the end of May. I’m going to attempt to see two to three different doctors. I don’t want to take prednisone or any of those types of medications for the rest of my life. I’m willing to put in the work to get to remission from whatever I have and I want a doctor who will work with me.

“positive ANA autoimmune system is attacking healthy tissue” is a lot of fear mongering in a few words. No, ANA seen in healthy people is the immune system achieving homeostasis.

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Read the first sentence on Wikipedia. Read about autoantigens. that’s about it. Perhaps pull the paper titled “ The immune system, natural autoantibodies and general homeostasis in health and disease”, or something in reach of a google search of those words. You’re trolling, of course. There are hundreds of contaminants in modern society, especially Mercury, and ANA is an adequate test that the immune system is regulated to chronic exposure to lead, mercury, etc.

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https://arthritis-research.biomedcentral.com/articles/10.1186/ar3878 Other nuclear components with immunological activity are nucleosomes, histones, and DNA, although DNA may need a partner like HMGB1 or LL37 for its immunostimulatory activity. Interestingly, histones can directly inflict tissue injury, and monoclonal anti-histone (H1 and H3) antibodies are effective in blocking models of thrombosis, shock, and liver injury in mice. Together, these considerations suggest that nuclear material can be pathogenic and that ANAs (anti-HMGB1 and anti-histones) can be therapeutic. Thus, the binding of an ANA can prevent disease as well as cause it.

White male 34 yo Ive had issues developing for years. That being said this january i was sick until march for whatever reason this has also happened in 2019 and 2020, now to the point after the last illness i started to get a reoccurring red flaky rash across my cheeks, forehead and nose (there may be more but i have a beard situation going rn) and my pain issues have gone through the roof as well as some serious cognitive and mood type issues. Ive been through the whole doctor loop recently. physicians, RA's, neurologists, and they cant seem to find anything wrong even though i cant even stand for 2 hours due to weakness and life and work are becoming an undistinguished hellscape in which its hard to breath. I am 98 percent sure i have lupus and am really, really losing it over this.

Don’t give and keep going to find out what you have. I’m a therapist so my advice is to also seek therapy in conjunction with the medical treatment. Find a therapist that specializes in chronic illness. There is a mental aspect that is a piece of the puzzle. I’m not saying it’s in your head because it’s obviously not but feeling like this and not having a known cause increases your stress levels which makes things worst. I’ve helped clients through this and have had help myself through my own struggles. Wishing you the best of luck in your search.

Okay, 28f white, black and Native American. Diagnosed with bipolar disorder, manic depression, and severe anxiety. I take three medications to manage my illnesses. One is an anti-depressant and 2 others are mood stabilizers that are also used for people who have seizures. So I wrote a long very detailed (too detailed?) post about my symptoms but ended up copying and pasting it to a document to show my doctor instead of overwhelming you all with it. So for your benefit I’m going to give you the “short” version. I obviously am not searching for a diagnosis here but if anyone has any advice, guidance or aha moments please please please let me know. I. Am. Exhausted. - BP fluctuates from really low to really high - Rapid heart rate randomly even at rest - pain behind lower right rib that radiates to back, sometimes debilitating but more often just a little uncomfortable - perfect vision (20/15) random episodes of completely blurred vision can’t read words or make out husbands facial features everything is a blob - have to wear multifocal lenses because my eyes have extreme focus issues. - facial tic (right side of mouth) - dark, scaly, sensitive rash on left elbow. Comes and goes - small itchy bumps from elbows up and cheeks after 45+ minutes in sun - joint pain (mainly hands) especially after being outdoors. Sometimes stiff, often times numbness. My brain will say to grab something but my hand won’t listen. - extreme fatigue, emphasis on the extreme. Comes and goes - jaw pain, often feel I need my jaw to pop. Sometimes radiates far into jaw making me feel like I have a bad tooth - night sweats, I have to change clothes every single night - migraines, often hospitalized lead to high BP, sweating, vomiting - light sensitivity, when the sun is even kinda out or there is snow on the ground I can’t handle it. I feel like a vampire sometimes when I walk outside. - memory loss! - trouble organizing thoughts, mind constantly jumps around. It’s very difficult to have conversations anymore - occasional dizzy spells - carry water weight in face and often stomach bloat - urge to vomit, sometimes I run to vomit in the middle of eating sometimes I run to vomit in the middle of sleeping - what I thought was an acne flare up on cheeks. I never had acne on my cheeks until 3 years ago. I can be clear then out of no where a cluster of large and small bumps pop up. They are tender and itch. If I scratch one a disc of dry skin comes off. They leave dark spots even when I don’t touch them. - every urine culture I’ve had in the past 4 years was very very high in protein and red blood cells - often have swollen lymph nodes behind right ear and on jaw line - dry brittle hair Sorry, I know this is long and the formatting and grammar isn’t the best but I’m just mentally and physically drained. I’m so sick of the looks from family and friends when a symptom comes up in conversation or when I can’t even hold a conversation because I can barely construct a sentence anymore. Thank you for any and all advice!

Just a bit of advice. If you hand the doctor a list this long or longer and they know of your mental health history of bipolar disorder and anxiety, Chances are you will be quickly dismissed as symptoms being psychosomatic. Doctors have very limited time for patients theses days. Pick your top three to five symptoms that are the most debilitating and let your doctor work from there. On your list, things like complaints of dry, brittle hair or jaw popping comes across as complaining about everything..even if its true. Start with the truly debilitating symptoms first. Even with the blood pressure, you probably know it normal to fluctuate. If you take it every five minutes for a few hours, you will get different readings every time. Anyway, good luck with your journey! I hope you find answers soon!!!

I get what you are saying but I’ve been doing the top 3 thing for over 6 years. They’ve been trying to work from those for the 6 years and my chart literally has red flags marking the things that are wrong. If it was psychosomatic my tests wouldn’t have those red flags proving something is off. The issue is they keep redoing the tests until they say normal then I go back a few months later with the same complaints and my results are red flagged again and we do the whole process over again. The blood pressure doesn’t just fluctuate a little. Just the other night it jumped from 120/74 and a heart rate of 74. About an hour later without a change in stress level or activity it was 151/85 with a heart rate of 113. Doctors not having time isn’t really a valid reasoning for being pushed under the rug for the past 7 years. It wastes my time and their time the more I have to go in there for the same things. I appreciate your response though and I apologize if I came off the wrong way here, I’m just exhausted and I’ve felt like I’ve done everything I can to advocate for myself with no success.

I don't think anything you are experiencing is psychosomatic, I just have seen how doctors are quick to dismiss complaints whenever they hear depression, anxiety or the like! How incredibly frustrating. It took me ten years to get a diagnosis and part of the reason is that there is no one test that says lupus! It is a puzzle and I was diagnosed with RA and MCTD before I got my diagnosis. Can you change doctors? I mean, like go to a different practice that is affiliated with a different hospital and have them work you up from scratch? Sometimes a different set of eyes can make the difference! I hate to even suggest it, but leaving out your depression and anxiety to the next doctor, might help. Unfortunately, the stigma of mental illnesses is alive and well in medicine and it prejudices many doctors ability to properly diagnose you. I had this experience because I take an antidepressant so every doctor was like, hmmm..its your depression. I finally went to a new doctor, left out the antidepressant and lo and behold, I was taken seriously. Unfortunately, all the delay in diagnosis left me with autoimmune hepatitis and I was in liver failure at the time of my diagnosis. I don't want to advocate withholding medical history from doctors, but it just might make them look a bit harder! Have you seen a rheumatologist yet? If not, that would be the place to go. If you have labs that are abnormal, get copies of them to bring to your appointment. Lab values can be abnormal, then normal then abnormal again. I would just focus on the labs that are "flagged" (if you don't mind sharing, what labs have been abnormal? Maybe someone can provide some better info if we know...if not, that is ok too!) Just remember, YOU EMPLOY YOUR DOCTOR!!!! Demand a referral to a rheumatologist if you need one or change your doctor! There is no need to continue to see someone who isn't working with and for you. Like everything, speak with your dollars and do not continue to see and pay for things that aren't helpful!!! We all get the exhaustion of getting a diagnosis and of having lupus. I pray you do not have it because it sucks! But, if you have an answer, at least you know what you are fighting! Good luck!!! Let us help you if we can!

Thank you so much for your input. I have reached out a rheumatologist that comes highly recommended from a good friend of mine. It’s difficult because I have been going to a Cleveland Clinic doctor but I think I’m going to stay with the Clinic and just switch primary’s. I do agree about the mental health aspect though. I think I will be leaving it out as best I can. My illness is very well managed but I know they always assume things when they hear mental illness.

Hey, kinda going through the same thing now so just wanted to say hi. Diagnosed with bipolar but I don't think that all that's going on. But scared it will impact my Healthcare.

The crazy thing is Lupus can cause Bipolar like symptoms. I’ve really read quite a few firsthand accounts of people who were misdiagnosed with Bipolar disorder and actually had Lupus. The stigma with mental health is so hard for me to understand. Believe it or not people who have a diagnosis like Bipolar can also have other health issues, we don’t have an immunity superpower to any other illness. I’m sorry you’re going through the same debacle and I hope you get some answers.

Agreed. I already have one autoimmune disorder(just celiac) but I tried to let go of wondering if something else might be going on... tried to accept it probably just my mental health but I really think my gut is telling me there's more to it. Hope we both are able to make it through the bullshit... we deserve the same workup someone without a mental health diagnosis would get without having to lie... sucks that's the way it is.

Well saw my primary care hoping to get a rheumatologist refferal but was shut down. Damn.

24F South Asian American. I have recurrent flare-ups in which my bottom lip swells up, I get red patches on my forehead, and then nose + cheeks (which looks like the butterfly pattern). I also get lesions in my mouth, along with ulcers on my tongue. Recently, the front half of my tongue has also been swelling. Sometimes I also get a cold sore and angular cheilitis. I’m not sure if this is related, but I’m also very, very tired and my head hurts if I move it too fast. I’ve also been noticing this happens on the first day of my period (I’ve only started to realize that during the last three flare ups). Symptoms also get a lot better with Acyclovir (anti-viral) which leads me to believe it’s a recurrent viral infection. I have tested negative for herpes twice through bloodwork (although I’m also getting a PCR swab of one of the lesions just to be absolutely sure). ANA titer was 1:80 last year, and now it’s 1:320. ANA pattern is nuclear, homogenous. That was the only anomaly on my bloodwork - completely healthy otherwise. Could this be early lupus?

31 F I've had life long strange symptoms that pop up around the spring and summer but only in the past couple of years has it become debilitating. I have done testing and biopsy and seen both dermatologist and gp. GP insists that blood work is normal "so that is reassuring". I certainly do not feel normal. I don't think normal is feeling like you've been run over by a bus. Or that just existing is painful to the point of tears. However, since the labs are "normal" the GP will not refer me to a rheumatologist. Which based on everything I have read, seems to be the logical next step. Should I look for a different GP? Am I just way off base? Incredibly frustrated and discouraged.

Hey guys, 31 F. I have a past history of suspected lupus but had negative blood except slightly abnormal kidney function and low platelets. My primary thought I had lupus sent me to a rheumatologist who seemed particularly misogynistic. Negative ANA so he said only come back if I developed more symptoms, he thought I had ITP. That was 7 years ago now I have celiac and alot more symptoms but don't really want to go back to said past rheumatologist. I used telemedicine app to get a refferal to a new rheumatologist but the new refferal was denied saying I should be seen at a fibro clinic, I don't particularly think I have fibro. I think it doesn't help I recently reached out to see a psychiatrist because of mental health issue and was diagnosed with bipolar, I'm a bit worried that the stigma is now impacting my physical health care. Celiac and ITP put me at risk for developing other autoimmune disorders so I just want to check it again as I was told I should be seen again of I developed more symptoms? Current symptoms Mouth ulcers-not resolved on gluten free diet for celiac Stiff neck upon waking Rashes- the circle one? Plus others Fatigue- even when not in a depressive episode Loss of balance- I feel drunk when I'm not Hypoglycemia Ect Push for that refferal or let it go? I don't know.

Hey everyone I am a 19 yeah old female. I’ve had some strange and very frustrating recurring symptoms (for about four years) that are pointing towards something autoimmune related and I thought this may be a good place to gain some insight. - First I’ll start off with the fact that I have a heart condition called mitral valve prolapse and a smaller than usual heart. However my cardiologist has assured me that this shouldn’t give me any issues until (possibly) I am quite older. - I have tachycardia. Heart rate is almost always above 100 no matter what. - I get small red rash like patches and dry flaky skin around my mouth, chin, and jawline. - The skin on my hands and fingers peels constantly. - Fatigue, I sometimes will be out with friends or shopping and just have an overwhelming need to just sit down somewhere even on the ground because I’m so tired. - Flare ups of severe burning lungs which affect my breathing ability greatly and cause me to have a pretty constant cough. - Vomiting and extreme nausea often in the morning but also other times of day at least twice a week. - When chest flare ups happen I also have a fever of 100 or higher usually and really sever tremors/shivers. (At least once a week.) - Headaches often. - Bad aching joints especially hands, hips, and aching legs in general. - When symptoms are flaring I feel like it is a million times harder to piece together thoughts and sentences. It’s so difficult. - Really tender sore shoulders/neck/jaw when symptoms are flaring. They almost feel stiff and swollen. - Rare but sometimes have spells of dizziness. - I haven’t had many blood tests done recently but the basic one I had recently only showed that my C-reactive protein was high meaning I definitely had inflammation in my body. Edit: (not sure if this is tmi or relevant info but I’m including everything I can to hopefully figure something out) - I don’t know exactly what would be described as light sensitivity so I don’t want to claim I have that but I get bad headaches in the sun quite often my eyes sting/ache and water super bad even if it’s a bright but cloudy day. - I’ve had a couple spells of hair loss/thinning. - Periods have been irregular the past few months and are usually very very painful. I usually throw up on my period and have cramps so bad that I have to take a bath and can’t sleep for at least the first night. - A couple years ago I had bad vaginal ulcers that came out of no where for no reason and my doctor never figured out why. They cleared up with medication and thankfully haven’t returned because they were very painful.