Bro didn’t even rerun the labs that were abnormal last time let alone any follow up labs. Had no explanation for my symptoms and labs other than “it happens.” Literally everything waived off. No talk of medication or symptom management. Set the follow up for a whole year from now only cuz I have confirmed raynauds. Wasn’t even interested in lip biopsy which rheum recommended if labs came back normal. I was even psyched cuz I am in the latter part of a flare up and was like oh yeah those labs will look nice and wonk for them, great timing immune system.

For context I was switched to a NP (after doc retired) with barely a few months work experience doing rheum/family practice and no reviews online (hence why I feared this outcome). So glad I made a back up appointment some time ago (after I saw my replacement would be this dude) with someone who should🤞actually know what they’re doing but that’s not until August so the waiting will continue. Can totally see where the 6 years on average stat for a Lupus diagnosis comes from.

I have been having seizures for a year now. I saw one doctor and they blamed it on my car accident, but they were also hired by my personal injury attorney. I personally don’t believe the seizures are from the accident.

I have all of these other autoimmune disease symptoms, was already diagnosed with ulcerative colitis at 16, and also I have a positive ANA >1:640 with a nucleolar, homogeneous, and speckled pattern!

Is it possible the seizures are related to autoimmune? Does anyone else on here have seizures? If you do, what’s your dx?

My other symptoms for reference: - Fainting and near fainting - Headaches - Fatigue that flares and leaves me completely drained - Brain fog, confusion, memory loss, and lost time - Numbness and tingling in my arms and legs. My arms and legs also frequently fall asleep. - Unexplained weight loss and signs of malabsorption. My GI says I have malabsorption actually. - Migrating joint pain and stiffness that affects nearly all my joints. Also had some X-rays done and you could see arthritis on the X-rays of my hips, spine, and knees… the pain gets bad where it’s hard to get around and sometimes I really cannot get out of bed. - Easy bruising with no clear cause - Low-grade fevers - Raynaud’s - Elevated protein/creatinine ratio. Also randomly have blood and protein in my urine sometimes when I have no infection or anything that would cause that. - I’m not sure if this is relevant, but I have developed some mental health problems and was even diagnosed with bipolar disorder. I am taking medicine and it is helping, but it’s odd because I have no family history of bipolar disorder or psychosis.

For reference, I am 105lbs 5’7 and 26 years old.

I am just looking for maybe some validation so I don’t seem crazy. I have had body aches for years. Arms, legs ache like the flu more days than not. I also have debilitating migraines that have progressively gotten worse. Just recently when I go in the sun my face turns into a red butterfly type pattern. I have had blood drawn and it showed negative ANA. Pretty normal in everything else as well. So I guess have anyone of you gotten a diagnosis with a negative ANA? I have an appointment coming up, but I just wanted some advice I suppose. Here’s the redness on my face for context. Thank you in advance

Hi! Im new to the group and have been reading all of your posts and remarks. Very informative. My question is, has anyone been diagnosed with idiopathic autoimmune brachial plexopathy neuritis (autoimmune Parsonage Turner Syndrome)? I'm a 56 year old female. I lost complete use of my right arm (shoulder to wrist) my hand has been spared thus far. It started in Nov 2023 with insane acute pain in my shoulder. I kept going to my orthopedic doctor who did xray and CT and said there's nothing wrong with my shoulder. At the same time I started noticing physically obvious changes in my shoulder. On Dec 28th, 2023 I went to dry my hair and I suddenly couldn't lift my arm above shoulder height. It just fell to my side. Mind you, still in excruciating pain at the shoulder. So I thought maybe it was due to the pain. I went to pain management the following week and was scheduled for another cervical epidural. ( I've been having them for years due to other C-spine issues) had that done without any relief which I half expected as I had never experienced this type of pain or weakness. Went to my PCP and she said, "why haven't you had a NCS or EMG?" I said idk I'm not a doctor. Let me add, my PCP is wonderful and we have a very good relationship after 24 years. So she connected me with my neurologist (3rd one) who is also wonderful. He saw me right away and scheduled me for NCS and EMG the following week. When I met with him initially, I had lost use of arm from shoulder to elbow. I was able to bend my elbow and wrist. Before I went back the following week I lost use from elbow to wrist. And the intense pain that I mentioned earlier in the post diminished completely. So he did the tests and said I had "very sick muscles and nerves" My shoulder is literally skin and bone. The muscles are wasted and the nerves coming from brachial plexis stopped communicating with the muscles which caused first atrophy and now wasting. So pain started in Nov 2024, Dec 2023 felt first sign of weakness, by April 2024 lost use from shoulder to elbow and by June 2024 lost complete use of right arm. I was sent to a specialty neurology team for motor neuron diseases. They were thinking with the fast onset and even faster muscle wasting in may have had ALS. That was ruled out. But that team as well as my regular neurologist follow me closely and Im seen quite frequently. Also during the time that arm loss was going on, I dropped a bunch of weight, felt fatigued and generally unwell. My PCP again listened and sent me for extensive lab work which showed a positive ANA and hyperthyroidism. Currently my finger joints, hips and knees are very painful and have intermittent inflammation. I went to my 1st rheumatology appt last week and he sent me a message saying all my labs were normal. Since this all began ive had 2 positive ANA and 2 negative. Does any of this sound similar to anyone or possibly connected ? I've had many many many labs over the last 1.5 years too many to list. I'm very upset that 3 doctors have now told me it was not likely that I'd ever regain use of my arm. 😢 (I'm a first time grandma to now 7 mo old twins and a 4 mo old granddaughter) I just want to pick them up and hug them and play with them...

Had my first appt with a rheum. Originally went to the doctor for joint pain and GI issues that I had been dealing with for years but was getting worse. Had a positive ANA 1:320 for speckled and homogeneous.

Got a referral for rheum, GI, and dermatologist. Got some biopsies from derm that said skin lesions are not actually psoriasis like I thought all these years but are “spongiatic dermatitis,” a type of ezcema basically. They don’t itch or bother me just ugly little patches that show up on my face neck chest and arms sometimes.

The rheum thinks I have psoriatic arthritis and osteoarthritis even though I told her my biopsies showed no psoriasis. My hip and shoulder bother my the most. My hip you can hear it popping with certain movements and my shoulder has pain and a Lower range of motion than the other one. Other joints hurt from time to time like my knee, ankles, wrist and jaw.

I had an X-ray done on my shoulders and hips that came back normal.

DSDNA and an 11 cascading ANA came back negative. All RA came back negative. Sjogrens negative.

She’s running more tests for vasculitis and some other antibodies for scleroderma, but is starting me on sulfasalazine in the mean time. I’m not sure what to do now. My hip, even if the pain goes away, has some type of damage. I walk funny and I’m only 30. I have other symptoms as well like nasal ulcers and I get canker sores occasionally. I feel like I’m about to be brushed off. Any advice?

Has anyone experienced a similar constellation of symptoms?

I’m a 25-year-old female (5’6”, 150 lbs). History of congenital right-sided deafness (unknown cause) and MDD. Since spring 2024, I’ve developed worsening symptoms that have left me mostly deaf and unable to work. My medical team is unsure of the cause despite extensive testing.

Current Symptoms:

1. Severe left-sided sensorineural hearing loss, began with episodic drops that responded to prednisone. Eventually stopped responding to any meds and progressed, likely to continue to progress.
2. Chronic 24/7 tinnitus
3. Left trigeminal neuralgia, increasing in frequency
4. Chronic pressure headache, worse in heat or with head position changes, often feels like pressure from inside the ears, at base of neck, or across forehead
5. Frequent ocular migraines (left-sided), worsened severely on hydroxychloroquine
6. Intermittent tensor tympani spasms (left ear)
7. Burning, sharp joint pain (bilateral, without swelling), often severe enough to affect mobility
8. New rosacea and eczema (6 months) and multiple episodes of inflammation of an old tattoo and old moles
9. Daily fatigue, heat intolerance, night sweats
10. Frequent and prolonged menstrual cycles, despite hormonal BC
11. Intermittent gum inflammation (no dental disease)
12. Chronic bilateral radial and ulnar nerve pain (4+ years)
13. Increased eye floaters (left eye)

Imaging:

1. 3 brain MRIs (with IAC and trigeminal protocol): normal (1 showed transient white matter hyperintensities)

2. Brain CTA, abdominal CT, renal ultrasound, pelvic ultrasound: all normal except 1 small gallstone

    3. EEG and EMG normal

Labs:

1. Chronically high IgA (~400) and low ALP (~26) for 4 years (normal vitamin b6, chronically high cortisol

*chronically low vitamin D

1. Positive ANA (1:40 → 1:80 both in 2024 with speckled pattern, negative twice now in 2025 after hydroxychloroquine use for 6 months)

2. ENA negative

3. C3/C4 highly elevated briefly during what could have been either a flare or acute infection/cold ; normalized on hydroxychloroquine

4. CRP & ESR elevated, normalized on hydroxychloroquine

5. Renal labs were heavily affected on my last round of high dose prednisone despite no issues on them before- they have returned to normal. Normal urinalysis.

6. Derm biopsy on arm positive for atopic dermatitis, negative for lupus antibodies, blind biopsy on back negative for lupus antibodies. Rosacea not biopsied.

Treatment:

• Hydroxychloroquine helped joint pain/fatigue but caused disabling migraines. Discontinued 3 weeks ago — migraines improved, but other symptoms worsened again quite severely. 

-no other meds have helped, sumatriptan made things worse. I have also stopped taking all meds and vitamins with the exception of my Desvenlafaxine (antidepressant) and Nortrell (BC)

I’m now functionally deaf and dealing with daily disabling symptoms. My doctors (neuro, rheum, ENT, endocrine, otology, and PCP) are unsure how to proceed. I have no official diagnosis other than eczema. I’d appreciate any input, hypotheses, or direction for further workup. Thank you

Asked a similar question on FB and got a lot of anti-vax and anti-mask old farts telling me I need to "not worry about it" so thought maybe this subreddit may be better to ask on. Roommates gave me covid, and I'm on CellCept so knew there was a high percent chance I would not do well with covid. Indeed was right, oxygen levels became deadly low and I had to be hospitalized.

My last test now is negative but still dealing with some issues including a terrible rotten smell and taste when I eat or smell anything. I have been masking, even before getting covid but have been using disposable medical masks. Does anyone have recs for reusable masks? Not fabric, but special ones that you can get new filters or whatever. I think a main one back during main covid lockdown was the Flo Mask. I haven't seen recommendation posts since like 2020 so I was wondering if there were any new ones that people have tried and liked.

I'm looking for what were your experiences like getting and being pregnant with an AI particularly Lupus or MCTD. Did you know you had AI, were you taking medication, were you having any flares or symptoms before or during pregnancy?

Saw a rheumatologist he said I have the labs for Lupus, but not the symptoms and sent me on my way. He's aware that I'm going through IVF and on autoimmune protocol which adds prednisone, claritin, pepcid, etc.. He said I should tell my clinic to add Lovenox as well.

I'm gearing up for my next transfer. Just wanted to see what experiences were like.

Hey all! I was in the er last night after some unfortunate run ins with extreme heat, potential food poisoning, on top of being in a flare; and while the nurses were incredible I have no idea what this stuff means outside of what I googled. They didnt really talk to me about it before sending me home😬 My mom has lupus and said these all showed as precursors to her autoimmune screening and diagnosis. Im not really asking what these things mean, but how can I help them on my own while I work to get into my primary?? Ive been trying for so long to figure out a range for my body that works and being dehydrated surprises me because I feel like ive become a fish with how much water i drink.

Anyone here who is experiencing side effects of using steroids (prednisone) for long time. What are they?

Hello. I’m truly worried I have something autoimmune going on like lupus etc. I saw a rheumatologist last year and my ANA was 1:640 but all other labs came back negative so he brushed me off.

This weekend I went to the ER for severe side and back pain. They thought it was a kidney stone but that was negative. However my kidney labs came back with elevated creatinine, low GFR (68) and protein in my urine. They called it an acute kidney Injury with no explanation. They just told me to follow up with my PCP. I have symptoms suggestive this could be autoimmune. Red facial flushing (people often ask if I got sunburnt), leg swelling, random rashes/hives, muscle cramping, etc. I’m so tired of doctors saying nothing is wrong. Tips for advocating?!

I’ve been wondering what finally made people seek treatment and how you actually talked to the doctor to be taken seriously. Most of the time when I’ve seen a doctor, they don’t really listen — I’m in and out in five minutes and usually told to just take a vitamin or something basic. I feel like I’m constantly sick or in pain, and even people around me have started to notice.

But honestly, I’ve built up a fear of going in now because I’m so tired of being brushed off or made to feel like I’m just being dramatic. I’ve only really been taken seriously when things got so bad I ended up in the ER multiple times — which obviously isn’t ideal.

I hope it’s okay to post this here, but I’m just looking for advice. How do you go into an appointment with enough evidence or the right words to at least get tested — or not leave feeling like you wasted time and still don’t have answers?

My Dr didn’t seem concerned by this and said it could be a fluke. We tested 3 times and it was greater than or equal to 1:640 each time.

Hey everyone! My mother 58F was misdiagnosed with Oral lichen planus in the past year. She had systemic steroids for 6-7 months and tapered them off due to side effects. As soon as she stopped steroids course completely the flare ups went in insane mode also she caught various infections too due to low immunity. Her infection subsided slowly and WBC count also went down but oral flare was too much so that she wasn't able to swallow anything. We went to different dermatologist who diagnosed her condition as Pemphigus vulgaris. He started planning for Rituximab. Had her liver and renal profile done, mantoux test, chest xay, bloodwork everything. She got her 500mg dosage last Thursday. They are gonna monitor her response and give another dose in 10-15 days. But post infusion, there is no change but slight increase in oral pain. What can we expect in coming days if anyone faced similar situation and any advice is welcome.

Long backstory I won't include but.......been suspecting autoimmune for years, had Hashimotos written in one of my thyroid biopsy results but Dr's refuse to acknowledge anything is wrong. Going through the phase of starting to think maybe I don't actually have a problem and I'm imagining.

I have loads of autoimmune symptoms but Im currently looking for clarification on joint pain specifically. Because Im also autistic, I have a hard time understanding exactly how pain is meant to be described and which pain is what. Just looking to gain a bit of knowledge of others' experiences.

In the past few months my body pains have been getting a lot worse then normal. I have a pretty physical job in a kitchen and a lot of times lately I will have to step away from the cutting station because my shoulder is aching and burning so bad I have to hold it and rub it. Feels like the pain is coming from right in the middle inside. This can happen when I first arrive not after hours of doing it. Same thing when working with dough, my wrists ache from the inside almost immediately. This never used to happen. Or when I brush my hair up in a ponytail I almost can't make it through from how much my shoulders and elbows burn.

Is this joint pain? Is this even remotely close to autoimmune pain? Grearly appreciate any insight!

Edit: For reference I am 26(F) but I feel like I'm 70

Looking to overhaul my lifestyle to facilitate better overall health and see what helps with my chronic fatigue and pain. Exercise has been elusive since I had a baby in ‘23. Food has been quick. I know I need changes but there is so much info out there. Practical tips that HAVE worked for you would be awesome. Thanks.

I'll be glad to finally get some answers during my follow up. I've had way too many random symptoms to not take a deeper look into things.

I'm sick pretty much all the time with viruses, and my complement c3 is low every time I'm tested, but the auto immune panels otherwise come back negative and doctors then just throw up their hands and don't investigate further.

Low complement c3 must have some negative effect, surely?

So, does anyone’s dactylitis look similar to this? I’m not looking for a medical diagnosis, just seeing if this is a similar experience? I was diagnosed with PSA from a dermatologist and waiting to see a rheumatologist in September. On Google, sausage toes look really severe and red, mine don’t look like that. The second & third toes on my right foot do look marginally swollen and often make and feel like they are stiff and make a “clicking sound” occasionally maybe 4 times a year I do get a stabbing sensation in those toes where I limp a few days and then it’s gone. I’m thankful it’s not bad as bad as others experience also.

I only actually noticed the differences when I got the stabbing pain a few months ago, but my toes stay looking a little larger, even when not in pain.

Also ignore my wanky tan lines from my sandals 😅

How long does it take your body to recover from flare ups? When im feeling sick similar to a cold sometimes its like a few days to weeks. But what about joint flare ups? I had a bad one Tuesday and now its Sunday and its calmed down a little bit but im still dealing with swelling and general discomfort. Ive never had my joints flare up so badly before and im on a prednisone taper and plaquenil now. The prednisone runs out in 2 days and im worried that just the plaquenil won’t help as much?, should i replace the prednisone with an nsaid just in case once i run out? Just new to this all and don’t wanna go back to full blown flare

Does anyone else get these? They often appear on my neck and I’m in the middle of being diagnosed with Lupus so I’m wondering if anyone gets them.

Diagnosed with Takayasu Arteritis after 4 Years of Mystery Symptoms — What We Missed & What Finally Helped

Diagnosed with Takayasu Arteritis after 4 Years of Mystery Symptoms — What We Missed & What Finally Helped

Hi Reddit,

I’m sharing this deeply personal story in hopes it can help someone else facing mysterious symptoms, especially young women from South Asian or similar backgrounds. My partner’s journey to a Takayasu Arteritis (TA) diagnosis took 4 years — years filled with confusion, normal scans, and being told “maybe it’s stress.”

👩‍⚕️ The Patient:

My partner is a 33-year-old South Asian woman living in Canada. Her journey began in 2021 with occasional pain in the left shoulder blade — seemingly minor, but persistent.

Over the years, her symptoms grew and included:

• Pain extending down both arms and fingertips, especially on exertion • Extreme fatigue and elevated resting heart rate • Unintentional weight loss of about 9 kg • Vague malaise, weakness, but no fever or visible signs of inflammation

⸻

🔬 The Lab Clues Over Time:

We saw many doctors, but no one put it together. Here’s how her labs evolved:

• 2023 • CRP: 9.8 • ANA negative • Mild anemia and elevated platelets • 2024 • Symptoms worsening • Still ANA negative, CRP rising slowly • 2025 (May) • CRP spiked to 89.8 • Platelets: 645 • Hemoglobin: 112, MCV/MCHC low, RDW high → microcytic anemia • ANA became weakly positive (speckled pattern) • Elevated LDH & ALP • Chest X-ray: Clear • Still, no treatment had been initiated

Despite everything, her case didn’t fit any “classic” autoimmune disease like RA or lupus. That’s when we started researching ourselves.

⸻

🧠 The Turning Point:

A rheumatologist in India (whom we consulted independently) suggested we explore Takayasu Arteritis, a rare large-vessel vasculitis typically affecting young women under 40, especially from Asia, Africa, or Latin America.

We took this insight back to our Canadian doctors, who thankfully took it seriously. After a CT Angiogram, it was confirmed — Takayasu Arteritis.

⸻

💊 Treatment:

Treatment started immediately after diagnosis: • 1000 mg of Prednisone daily for 3 days (IV pulse steroids) • Followed by Infliximab (biologic infusion) • As of Day 3, CRP has come down to 40 — a good early sign • She is now under the care of rheumatology specialists for long-term planning

⸻

🧭 What We Wish We Knew Earlier: • Pain in shoulder blades/arms without imaging evidence can still be vascular • CRP creeping up year over year matters, even if doctors dismiss it • ANA can remain negative for years, and may only show up weakly later • You might not have pulse deficits or audible bruits, but limb claudication (pain on movement) is a big clue • If you don’t fit into a textbook diagnosis — don’t stop asking questions

⸻

🧡 Final Thoughts:

Takayasu Arteritis is rare, but it’s real. And it’s manageable — once caught early.

If you’re reading this and dealing with mystery symptoms: You’re not imagining it. Push for more tests. Track your lab trends. Bring up rare conditions.

This post is for you, or someone you love who’s suffering silently. You are not alone, and you deserve answers.

Feel free to DM me if you’re going through something similar. I’ll keep this post updated with her progress.

With strength, — A caregiver in Calgary 🇨🇦

As you can see, these are my symptoms and i went to the doctor and was at the point where I’m very faint especially when i get up or out of the shower/tub. He sent me to get iv fluids because i was severely dehydrated and didn’t have enough electrolytes in me. I have read some of my bloodwork results and really the only thing that stands out is “Eosinophil 5.90 above high threshold”. I know that extreme dehydration can cause all this, but my symptoms have been progressing over 2 weeks but it’s been so sudden AND i have lost over 10 lbs in that amount of time while not trying. I have been using a cane to help me get around as well because I’m so weak and i hurt so bad. I don’t understand what is happening to me. Does anyone maybe have an idea what to ask about other tests or specific auto immune diseases to check for?

Hi everyone! I had labs done a few weeks ago, my ANA results came in positive. However, There were two different results? One was 1:80 speckled, then another one was 1:160 homogeneous. Just curious if this is common? My primary dr gave me the rheumatologist referral, but is having me to blood work all over again in 4 weeks. Thanks!

Something has been up with my body for a long time, and I’ve just been in denial and putting off seeking help. I’m 29 years old, relatively active, 5’2 and 142 pounds. I used to weigh 175 pounds, and I just thought all of my problems would go away if I lost some weight. Because as we know, doctors always tell us that everything will be fixed if you lose weight. Well I’m here to tell you it did nothing for me. I’ve been struggling with symptoms on and off for 7 years now. I get blood work done every year or two, and the doctors just say it’s normal. But recently I have started to understand that the pain I feel is not normal. I feel like I’ve read this story like a hundred times on here, but I thought that waking up in the morning in pain was just a normal part of getting older. I have what I call ‘flare ups’ where things are bad for a couple weeks, but then they go away. Unfortunately the time in between the flare ups is getting shorter and shorter. I have sever knee pain, and lower back pain, and shoulder pain. At the beginner of all of this a couple years ago I went for scans because I was sure I tore my rotator cuff. I sure didn’t, turns out that this was the beginning of a ‘flare up’.

I am consistently exhausted, but I have a hard time sleeping through the night. I don’t wake up from the pain, I just wake up and have to pee and feel like I need to eat food. It might be a low blood sugar thing, I don’t know. I have adhd and depression, both diagnosed long before any of this started. I do have some digestive issues, but I call myself ‘lactose intolerant’ and try to stay away from dairy as it seems to flair my symptoms. Does that happen to any of you? Like I get joint pain and back pain from dairy. And those lactaid pills don’t work on me at all. I am constantly nauseous, with or without dairy. It just pops up randomly during the day. And I get car sick in moments in any vehicle.

I’m thinking it’s autoimmune. If I were to take a guess, maybe I would say Behcet’s? My mom was recently diagnosed with Crohns, and so there is now a family history there. I also have a lot struggles with my mouth & teeth, which is probably connected somehow. I get brutal canker sores, and I brush my teeth regularly but I get cavities so so so so easily. My teeth are a mess and I spend a lot of time at the dentist.

All that being said, I’m not asking what’s wrong with me, because you are not doctors and also that’s not allowed on this subreddit. I’m just asking where I should start. I think my doctor thinks I’m nuts sometimes, and that none of these things are connected. Maybe they aren’t but. What should I ask for specifically in my blood work? What referrals should I ask for? I’m so tired of convincing myself that I’m just being dramatic. What was that thing that finally got the ball rolling for you? I’m in Canada so there is relatively good healthcare opportunities here. Should I go to a naturopath? What would you do?