hi just wondering if anyone has any advice for me please. I am 42 year old female, medical history includes hashimoto, endometriosis, reactive arthritis, allergies and Raynaud's. A couple of years ago I was feeling crappy and tested mildly positive for ANA in homozygous pattern. Anyway I moved house and didn't get further help as started to improve but this year has seen the above signs again, negative ANA though. Also have constant aches and pains in body so bad that it can make me cry, exhausted all time, sleep awful and rash on face. See photo . Have now been referred to rheumatology. My pains feel more like deep tissue pain as opposed to joint pain. Any ideas/ advice /opinions? Many thanks

Hi, can anyone tell me what these results mean or possibly give me some peace of mind? 25F, chronic (10 years) arthritic pain/inflammation in all joints and apparently a butterfly rash that I thought was normal. My hair has also been falling out/thinning and breaking for months, no matter what I do.

Creatinine levels high (1.14). CRP high (8.9). Absolute Eosinophils 601. Negative for rheumatoid and sjogren's. Positive for the test titled: Lupus (12) Panel(ANA SCR, IFA W/REFL TITER/PATTERN/Lupus PNL 4). ANA IFA titer 1:320 marked as high with homogeneous nuclear pattern. HLA-B27 marked as weak positive.

I should probably mention that I'm under a LOT of stress at work. Thursday night I started to get a sore throat. Friday swollen lymph nodes & feeling weak followed. Saturday all previous symptoms plus body aches & chills followed, but no actual fever (highest temp was 99.1). Yesterday felt run down, and today I feel fine minus slight congestion. No pus pockets. Negative for COVID & strep. Could that be autoimmune related? Used to happen to me in college, too, but nothing ever came of it. Not tonsillitis either.

My rheumatologist hasn't called me back and I feel like I'm going crazy looking at my results over and over again. Not looking for a reddit diagnosis, just trying to figure out if I should worry about the possibility of it truly being Lupus or not, and I haven't been accepted to post in the "ask a doctor" group yet.

My face gets flushed looking like this every so often. I have been having high blood pressure for the first time in my life this past year and was actually just prescribed a medication for it after several months of consistent high blood pressure readings. I have also been having issues with red swollen fingers and joint pain in my fingers and wrist, sometimes hips too. I have always had GI issues my entire life and am sensitive to cold (fingers and toes very often feel like icicles). Then the past 2 years I have started having very severe recurring UTIs that have me peeing blood (and blood clots) but not always the same bacteria present, and the most recent episode showed no abnormal bacteria presence at all. Instead I had elevated protein and my most recent blood test results have also shown a high level of creatinine as well. My hair has been thinning for several years now. I’ve finally started to realize all of these things may be related, that it may all actually be caused by Lupus. I have not yet seen a rheumatologist, I have only just gotten a referral for one. Any opinions? Do you think it could all be Lupus?

Hi all,

I’m a student researcher currently working on an autoethnography about the journey to getting a medical diagnosis, with a particular focus on the challenges faced when dealing with disbelief from doctors and numerous specialists. I’m reaching out to both individuals who have finally received a clinical diagnosis for an autoimmune disease or similar condition and those who are still searching for one.

If you’re willing to share your story, I’d love to hear about your experiences. Specifically, I’m interested in understanding:

1. For those who have received a diagnosis:
   • Can you describe your journey to getting a diagnosis? What challenges did you face along the way?
   • How did you feel when doctors or specialists did not believe you? Did it affect your mental health or your approach to seeking a diagnosis?
   • What strategies or approaches did you use to advocate for yourself? Did you find any specific tactics helpful in getting the attention and care you needed?
   • Were there any particular moments or experiences that were turning points in your journey? How did these moments impact your path to diagnosis?
   • How did you eventually receive your diagnosis? What was the process like, and how did you feel when you finally got the answer?
   • What advice would you give to others who are currently struggling to get a diagnosis? Are there any resources or tips you found particularly helpful?
   • How has receiving a diagnosis impacted your life, both physically and emotionally? How do you manage your condition now?
   • Are there any misconceptions or common misunderstandings about your condition that you wish more people were aware of?
   • Did you find support from any particular groups, communities, or individuals? How did these sources of support influence your journey?
2. For those still searching for a diagnosis:
   • What has your journey been like so far? What challenges have you faced in getting a diagnosis?
   • How have you coped with the disbelief or skepticism from healthcare professionals?
   • What strategies or approaches have you tried in advocating for yourself?
   • Are there any specific barriers or obstacles you’ve encountered during your search for a diagnosis?
   • What kind of support or resources have you found helpful, and what do you feel is still lacking?
   • How has this ongoing search affected your mental and emotional well-being?

Your insights will be invaluable in understanding the broader experiences of those navigating the challenging path to a diagnosis. Thank you in advance for your time and willingness to share!

Disclaimer: Please note that your answers will be used in a student ethnography project. While your experiences will be valuable for my research, rest assured that your names and any personal identifiers will not be mentioned. The final paper will be read only by my professor and will not be shared publicly. Thank you for your participation and support!

p.s. I want to share that I also have an autoimmune disease and have experienced many of the challenges and frustrations that chronic sufferers often face. My research is deeply personal, and I understand the difficulties of navigating the diagnostic journey from my own experiences. My aim is to gather and share diverse perspectives to better understand and support those who are going through similar struggles.

Feel free to message me if you do not wish to publicly respond to this post!

Hey! I was Dx with SLE back at the end of 2022.

Before Dx, I followed another rheumatologist who said I had UCTD. This doctor would run an ANA and other labs at every other visit. They were always positive.

My new doctor, who diagnosed me with SLE only did my ANA once. It was negative, but he still diagnosed me with lupus because of other testing and symptoms I guess.

I always hear about people with lupus getting their ANA checked semi regularly. So, is this normal that my doctor doesn't seem to want to re run an ANA test on me after a few years now?

It’s taken 4 1/2 years to have a doctor test me. My ANA came back positive and it’s on the severe side 1:1280. I’ve had doctors tell me to my face that I was “crazy” or “too young”. I’m so relieved to finally have a doctor listen to me after suffering for so long.

I’ll make this as quick as I can. I am auto-immune positive. My ANA tested twice came up 1:1280. I also have all the markers of Lupus and Sjogrens. I have all symptoms too. All of them even the butterfly rash. Yet the specific blood test for these keep coming up negative so my rheumatologist just classifies me with Undifferentiated Connective Tissues Disease. He put me on Plaquenil. It’s not helping me!

Now I’m starting to have all the symptoms of Myasthenia Gravis and that tested negative too. I am just beyond frustrated. I do have a neurologist appointment in August so I should have more answers regarding MG at that point. There is a seronegative diagnosis for MG and I am so certain I do have that.

My question is? Has anyone here been given a seronegative Lupus Dx? I just read that this is a real diagnosis and I was beside myself! I could have been getting better treatment all this time!

Hi everyone! Explore this website page to learn more about lupus. Access additional support resources and consider subscribing for monthly email updates!

https://www.patientwing.com/conditions-and-diseases/lupus

I see rheumatologist in June just looking for thoughts

Hi. So I hav3 1:320 speckled ANA , and dsDNA binding autoantibody is abnormal, this have been sent to rheumatology to seek an SLE diagnosis.

Admittedly I'm worried as I don't know what to expect from my first appointment. What sort of tests do they run? Will they check my weight or will that be unnecessary?

I appreciate any advice, experiences and anything else.

Thank you.

I was diagnosed with lupus but I never learned what type. Is this normal for other people? I’ll eventually move to Texas to get a more specific diagnosis. My mom thinks it’s skin lupus but she doesn’t know anything about it.

At some point I tried to figure out what the differences between the different types are. There were sources saying skin lupus could affect other organs too so I don’t even know if there is a genuine difference

Met with a Rheumatologist the other day for the first time. I've had a few positive ANA tests in the past and my doctor never said I need to too anything. After speaking to a few people and telling them some things that have been going on with me over the last year, they recommended I see a rheumatologist, especially after having multiple positive ANA tests.

She ordered for a bunch of blood work to be done, and to do a week of prednisone to test for Lupus. She said if I feel better then it is without a doubt Lupus.

Prednisone scares me or at the the very least makes me very leary. Is is this a standard was to help diagnose Lupus. I know there is no one test. Thanks for any info!!

Blood tests came back with

Low WBC 2.5 (usually low)

Absolute Neutrophils 1,050

C-reactive protein 0.5

Leukocyte Esterase Trace Abnormal

Hello everyone,

My name is Cali Boustani - I’m a Master's student in Biotechnology at Brown University.

Due to watching my mother battle rare disease and pain growing up, I am currently working on a project that aims to build science backed solutions and improve the quality of life for individuals experiencing chronic pain.

I am reaching out here with the hopes to learn from any of you that would be willing to talk with me. Your experience in managing lupis will help guide me on how to best help you. If you are willing to share your story and discuss the obstacles you encounter with pain management, I would love to talk to you.

To schedule a time to chat, please DM me. Hope to hear from you soon.

I finally have my Rheumatology appointment this Friday morning. I really hope it goes well. I cant tolerate this everyday pain anymore. Its so exhausting, I feel like I cant do anything that I used to enjoy. My back is constantly twitching, the pain never stops. It gets so bad it makes me light headed and almost pass out. So many more symptoms, so many to list. I just hope I can get some sort of relief after my appointment. I cant take this pain anymore.

I'm not sure if this is the right forum to ask this, but I am curious to understand the ENA panel and how to read it. The panel includes Jo-1, Ribonucleoprotein, SCL-70, Smith, Sjogrens Syndrome-A, and Sjogrens Syndrome-B.

I was wondering which autoimmune diseases do these tests correspond to? Also, what numerical range is associated with a given disease condition (for example, lupus, sjogrens, etc.) on these different tests? (If you have a link to a published paper that answers these questions, that would be great too.)

So I have had a rash that has appeared a few years back. It looks the perfect shape of the butterfly rash and appears with food or stress. When it appears I feel flushed, sick, dizzy and tired. It usually lasts 30 mins to an hour. I was tested for food allergies but negative results on that. I have new pains in my joints all the time that the doctors can never find what caused them. I'm tired all the time and can pass out in the blink of an eye when I lay down. I have cysts on my kidneys and scaring. I also keep developing ulcers in my stomach. This past year I have developed a mass sensitivity to cold on my fingers to where grocery shopping in the frozen sections are painful. I may have forgot something but does this sound familiar to anyone?.. should I investigate the possibility of lupus? Thanks

I have a question.... my daughter is about to get married in the next year and her insurance will change. We beleive she has Lupus and we are afraid to pursue a dianosis. We are worried if she gets diagnosed now, when she switches insurances it will be considered a "pre-existing condition". Should we wait to pursue a diagnosis? Will her new insurance cover her?

So my results are in and I’ve officially been diagnosed with Lupus, no clue what kind, and no idea what the next steps are. I was just sent a message in my patient portal telling me I had it and to schedule a doctors appointment with my PCP soon. Can someone please help me understand it more? I know pain is involved, but I also have Fibromyalgia so that’s nothing new. Other than that I know NOTHING. I know it varies person to person, but ANY insight is greatly appreciated! Any diets that might help manage it more like going vegetarian or something? Literally ANYTHING will help!

ETA: I’m a 22yr old trans man, dunno if that’s important

Hi Everyone I myself as a lupus patients is developing a prototype which can help everyone of us, so to help me can some of you tell me about the common problems you may face which I can include in the prototype for instance I've already included a symptom tracker, a medication reminder and curated health resources. If anyone have any other suggestions please let me know

Hi all I just had a ANA blood test and it came back positive with a titer of 1:160 what does this all mean? I don’t see my dr that ordered the test (neurologist) until next month

Spanish speakers with lupus

Hi I'm looking for Spanish speakers participants with lupus for a very short interview. It pays $25 for 5 min of your time. This type of interview is called linguistic validation and it is very simple. Please let know if you or someone you know might be interested.

Hi all!

Do you have Cutaneous Lupus Erythematosus (CLE)?

Clinical Outcomes Solutions, a healthcare research company, is conducting research into CLE

through an exciting in-person study.

Eligible participants will be compensated for time and effort with 100USD.

You may be eligible if:

• Be 18 years of age or older

• Have a clinical diagnosis of active and severe CLE

• Able and willing to take part in 60min telephone interview.

• Not participating in an interventional study on the dates of our study, listed

above

• Don’t have active neuropsychiatric SLE

This research is confidential. Any contact information you provide will only be used for the

purposes of compensation and interview scheduling.

Please contact us at j.rodriguez@medicysltd.co.uk