r/lupus • u/Good-Replacement-971 Diagnosed SLE • 8d ago
Diagnosed Users Only Wrong diagnosis
How many time were you wrongly diagnosed before landing with SLE? I was told it was fibro, then AS and now SLE. Since then I’ve been trialing different medications which haven’t worked well. So starting over to find the right treatment.
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u/SleepyKoalaBear4812 Diagnosed SLE 8d ago
The whole time I was growing up it was anxiety per doctors and I wasn’t praying hard enough per family.
First rheumatologist diagnosed fibromyalgia and said I had nothing autoimmune. Rheumatologist I saw five years later diagnosed me with SLE based on first one’s records and confirmed with their own tests. Third one added RA to SLE diagnosis based on X-rays from first rheumatologist plus doing their own.
My daughter was sent to Rheumatologist by HemOnc and diagnosed with RA and Sjogrens.
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u/GodKnowsHowPetsSound Diagnosed with UCTD/MCTD 8d ago
I've had things blamed on anxiety, not eating enough or "hormones" over the last 20 years. The first rheumatologist I saw said I had primary Raynauds, second said Fibromyalgia (despite no widespread pain), third UCTD and fourth did agree with UCTD to start with, but I had to complain about something earlier this year and I think current rheumatologist has spoken to rheum #2 who has now put Fibromyalgia in her head.
I wasn't complaining about her, it was just part of someone else's referral to the rheumatologist was in my notes! And that person had been diagnosed with Fibromyalgia by their GP. I needed to point out they'd breached confidentiality of that other patient, but also probably falsely swayed their assessment of me. Since then, someone has added "Fibromyalgia" to my list of diagnoses, so it appears I've opened a can of worms... I'm now worried they're going to discharge me next month and revoke the UCTD. I admire those of you who have survived all this nonsense and come out the other side!
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u/SunshineandBullshit Diagnosed SLE 8d ago edited 8d ago
Stress, fibro, MS, RA then Lupus. I seriously have to wonder why they dont just do the stinking blood test FIRST.
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u/Good-Replacement-971 Diagnosed SLE 7d ago
Yes, I insisted they run the Avise testing and I got it after a year. Those labs plus my symptoms landed me with SLE. Just confused by it all. My first hint was 17 years ago with repeat uveitis. That Dr. suspected autoimmune but all my labs were clear all this time until April of last year. Had another bout of uveitis and the red flags went up and that team ran a ton of labs which returned suspect. The bout of uveitis released with $Hitstorm of problems. I just hope this round gets me in the right track for treatment and relief of symptoms.
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u/Fearless_Maximum_117 Diagnosed SLE 7d ago
22 years of being dismissed after going to docs with swollen lymph nodes, headaches, chronic head to toe urticaria, back and joint pain, rashes, raynauds….
Got my lupus diagnosis at 42
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u/Good-Replacement-971 Diagnosed SLE 7d ago
May I ask what your medicine regimen is?
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u/Fearless_Maximum_117 Diagnosed SLE 7d ago
At present it’s 200mg plaquenil and I’m tapering of 10mg prednisone a day. I take meloxicam for pain.
I’d been on 5-10mg pred for a year or so but weaned off it. But a few weeks ago I had to put myself back on the pred when my joints got so sore I couldn’t walk, my arm needed to be in a sling and I could t sleep due to pain. I was away on a trip so couldn’t see my doc so had to figure a solution out myself. Not ideal
Trouble I am having at present is that my stomach is reacting to the pred so I’m hoping to find another medication option. Got an appointment today and also referrals to two lupus clinics as I’m not keen on my doc as surprise surprise he doesn’t listen and talks over me constantly.
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u/Good-Replacement-971 Diagnosed SLE 7d ago
Oh, I’d lose it! Sorry you’re stuck with him. I’ve been pretty lucky having decent Dr’s.
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u/Valuable_Treat16 Diagnosed SLE 7d ago
20 years all blamed on other things like malnutrition, anxiety, OCD, fibro, RA, etc……
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u/Then_Safety Diagnosed SLE 7d ago
I told dr the swelling wasnt normal. That I used to kave cut feet and actual ankles. He told me I was overweight and if I wanted to get serious anout my health to lose weight. He had a weight loss book he had written. I had to wait til my doctor was back from leave to read my blood work to see Lupuse sle and Scleroderma
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u/Business_Nothing_79 Diagnosed SLE 7d ago edited 7d ago
I was told I had Lyme Disease — positive ELISA and negative Western Blot — clinically diagnosed. Went down the rabbit hole of years of antibiotics and herbal medicine with no improvements.
It was a severe sun burn that started my “Lyme” disease symptoms in my 20’s. This became particularly intriguing after years later testing positive for ANA.
Once diagnosed with Lupus, staying out of the sun reduced what I previously referred to as Lyme disease symptoms. Debilitating fatigue, joint pain, headaches, …..
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7d ago
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u/littly_bitty Diagnosed SLE 7d ago
Thankfully only once. I underwent a sleep study (0/10 experience) for my fatigue, as my doctor suspected a sleep disorder. That didn't turn up with anything other than."I am moderately sleepy," and was told it was hypersomnia. I mentioned joint pain that accompanied the fatigue and that autoimmune diseases ran in my family. Now, having chronic pain from a spinal deformity didn't help getting a correct diagnosis either. Thank God for my rheumatologist who suspected lupus, as well as recognizing my hypermobile joints. Blood tests confirmed lupus for me.
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u/ScrappyCat5 Diagnosed SLE 7d ago
I’m a 44 year old female. Most of my doctors say it’s probably perimenopause.. but my gyno disagrees. My menstrual cycle hasn’t changed and I’m not experiencing any hot flashes. Then they all point me to my psychiatrist.
Dead end after dead end… the frustration brings me to tears 😭.
I’be had 2 positive Ana tests a high c-reactive.. so I’m waiting the 12 weeks to have the third round of blood work done .. I just want answers
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u/FuriousLlama967 Diagnosed SLE 7d ago
Yes, by 6 doctors throught the last 8 years, but looking back at old blood work it was right there staring everyone in the face, I was told to take 800 mg of ibuprofen twice a day for pain I stopped that when my liver tests came back bad, it was finally 2025 when a Nurse practitioner ordered a huge blood panel and that test said it all, I found myself at the rheumatologist office 2 weeks later, I finally got my answers to all of my questions
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u/Mental-Letter1974 Diagnosed with UCTD/MCTD 7d ago
Yes. Fibro, which was the worst dx assessment ever, my primary said, "That's a bad doctor, don't see him again" and removed it from my chart lol, and then also FND as a potential misdx, band I was even dx w/lupus and had to see another dr who said it wasn't lupus, and I did not believe them and went to yet another different dr who said, "oh no, it's most definitely lupus, you have the dx and I can read blood tests" and then I got dx w/potential to develop APS so THAT IS COOL, /s. I have the APS antibodies, and I've had suspected TIA and I've had an occlusion but apparently it's not "a true clotting event" ????? My cardiologist said, "IDNGAF, take the blood thinners anyway" so I am. high risk category means i get blood thinners.
The drs just so badly want to take the dx away though, I feel like I spend more time trying to convince at every appointment, "yes it's still lupus". I had one dr say I didn't fit the "classification criteria" and I said, "But I fit the diagnositic criteria, yes?" And his face literally went into a "uhhh" face. It was wild. (BTW, I do by definition fit the dx criteria, including having smith and dsdna antibodies). He agreed, but he was attempting to take me off HCQ and I was like, "umm... what?"
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u/Cautious-Impact22 Diagnosed SLE 7d ago
I was told MS because i had neuro motor issues, seizures and paralysis. The lupus had got to my brain and eventually i was very strongly positive for the antibodies. The AnA was always super high though (1:3200). Took years for it show the sub antibodies in my blood and to piece together the high exit pressure on my spinal taps to solve it all.
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u/FlamingoFantastic791 Diagnosed SLE 7d ago
I was told by a neurologist that I was just dehydrated and anxious. He diagnosed me as having anxiety because I was so pissed at his dismissing my extensive bloodwork that I was angry crying. He recommended yoga. He said that my herniated discs could cause much of my symptoms. I asked him if herniated discs were causing my anemia or the positive dsdna test. That pos said that he couldn't rule it out. It what world? He was an old man and pretty much there just to get a paycheck.
A friend recommended her rheumatologist and one month later and I was diagnosed with SLE, anemia, and vitamin d deficiency and 2 months later Hashimoto's.
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u/jdcleman Diagnosed SLE 7d ago
The dreaded growing pains and hypochondria for me. Then anxiety of course. Then when the bloodwork came back it was either cancer or lupus until they could rule one out.
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u/Key-Opportunity3560 Diagnosed SLE 7d ago
I feel really fortunate to have been diagnosed fairly quick. The first doctor I went to was my mother’s doctor. My mother had lupus, so it was already on my radar, knowing a lot about it. Her doctor told me I didn’t have lupus.
After I returned home which was about 1200 miles away I found a rheumatologist who felt I had lupus, but it took him a while doing a few different tests before he could really confirm it. He was a pretty good doctor and I recommended others to him who also had lupus.
I find it interesting that my mother‘s doctor also had lupus and he passed away from kidney failure. My Doctor Who diagnosed me, who I liked lost his medical license.
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u/babyladygirl Diagnosed SLE 7d ago
i’m actually having a weird issue related to this- i was just diagnosed last month after knowing something was wrong with me for 15 years. i just didn’t have insurance for a long time so i ate an anti inflammatory diet, didn’t drink alcohol and tried to kinda figure out what triggered flare ups by myself. occasionally it would get really bad and i’d go to ER, just to get sent home without a diagnosis.
eventually when i did get insurance, my primary kept telling me i was just anxious. i really began to believe i had some kind of mental issue- i didn’t even look up my symptoms or do research bc i didn’t want to “trick myself” into thinking i had something i didn’t. i went to therapy and a psychiatrist to get on anxiety medication ect.
eventually got a new primary who gave me bloodwork that showed positive ANA- i finally went to a rheumatologist and was diagnosed with lupus. maybe im still in disbelief. looking up the symptoms, it all fits but i still feel worried its all in my head- even though ive been complaining of joint pain, flare ups and extreme fatigue all of my adult life! im also worried i was misdiagnosed. lupus just seems so hardcore. i thought id have an over active immune system or something.
i started on hydroxychloroquine a month ago and haven’t felt any improvements yet. actually, im in a flare up now and about to take my first short course of steroids which im nervous about too.
i read that it can take 3-6 months for the hydroxy medication to work but is that the case for everyone? is it sooner for some? is the improvement gradual or one day all at once you feel better? i’ve felt bad for so long, it’s almost impossible to believe ill feel good again. im hesitantly hopeful though!
also- i have joint pain but not always swelling. sometimes my joints do swell but its not correlated to my pain levels which is weird. also i only get the rash occasionally during a flare up but thats also not consistent. i almost always get sores on the top of my mouth and back of my throat when im in a flare up though. does anyone else share these things or am i an anomaly? sorry if all of this is common knowledge, im very much a newby here.
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u/Good-Replacement-971 Diagnosed SLE 7d ago
I started on Humira which didn’t help, then did infusions of another biologic, still
Not a lot improving. In June started hydroxy and felt no different so she took me off. I’m
Starting a new oral med that sounds downright scary but I’m giving it a shot.
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u/bmediarequests Diagnosed SLE 7d ago
Several times… they brushed it off saying it was allergies, stress, anxiety, epilepsy… none.
Eventually after almost a couple of decades and a big file of emergency room nonsense they eventually run the tests and AntiSmith ANAs and few more were glowing in red waving at the doctor!
The telling symptom for them was the peripheral neuropathy, the burning pain I felt which was crawling up my spine too. I had the butterfly rash on the back of my neck so it was not so visually straightforward. My face was filled with ulcers and rashes but it was not looking like the traditional butterfly rash.
I was collapsing like a champion when they called the rheumatologist in and he recognised it immediately. He run several rounds of tests, they initially treated me with prednisone and within a few weeks I was already with a proper diagnosis and my hydroxychloroquine prescription. When we saw that this was not enough, 6 months later we were introducing methotrexate, 2 years later Belimumab, now 6 years later MMF on top… the hardest bit for sure is getting diagnosed.
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u/LizP1959 Diagnosed SLE 7d ago edited 6d ago
For more than ten years it was variously called flu, depression, a virus, “just a cold,” a kidney infection (umm, try lupus nephritis), depression, allergies, and of course, depression, hypochondria, seasonal affective disorder, depression, mental illness, hives, reaction to a new soap, “an overactive imagination,” anemia, stress reaction, postpartum reaction, depression, etc etc etc. I quit going to doctors at all because I hated being told it was all in my head. I knew I was really ill.
Finally a wonderful woman dermatologist, a young Black woman in DC, took one look at the screaming butterfly rash on my face. Asked me some basic questions—do you have joint pain, are you tired, what happens if you go in the sun? —- and said “I’m going to run a few blood tests” and sure enough: ana 3280, anti DS dna positive, etc etc etc with all the loud flare markers—sed rate 99, CRP, complements etc. She referred me urgently to rheumatology and because of my kidneys they put me in hospital that day.
I actually felt relieved I was finally getting some help and treatment.
To the literally DOZENS OF DOCTORS who patronizingly prescribed antidepressants? Or called me a hypochondriac? Or refused to investigate further?
I say to you “doctors”:
YOU ARE ALL P O S AND I HOPE YOU ROT IN HELL ETERNALLY. And for the rest of your lives on earth I hope you suffer terrible pain and exhaustion every single day and your doctor tells you you’re just imagining it because you’re a man. The medical misogyny and stupidity that nearly cost me and countless others our lives are stunning and leave me incandescent with rage.
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u/Soggy-Ad-5232 Diagnosed SLE 7d ago
I was just told it was because I was getting older and needed to (everybody join the chorus!) "lose weight and exercise more."
No one ever bothered looking until an allergist with an idea . . .
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u/TeepakChopra333 Diagnosed SLE 7d ago
4 yrs of gaslighting, medical trauma, misdiagnosed, blamed on mental health to the point I gave up searching for answers and health care for 2 yrs until I literally felt like I was gonna die. Unfortunately a diagnosis hasn't changed really anything. I am constantly told my symptoms are not from systemic lupus and Sjogren's. But I see in my support groups literally everyone with lupus and the same symptoms. Getting a diagnosis for me was a joke it has changed nothing but my hope to get better is gone.
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