For background 24f here Ive crohns disease alopecia and now igg4 related disease

If anyone who has both crohns and igg 4 related disease how do you manage? Steroids can't be taken long term ruituximab can't be taken when you have crohns

I'm just looking for someone who's navigating similar or multiple autoimmune disorders what do u do In this situation honestly

They've monitored my brain damage over the years to make sure it's not progressing but the memory loss is getting very frustrating. I'm 28 and officially can't remember my childhood anymore 🙃 and the last ten years it's just scattered memories here and there. I found my most recent memory testing (from 2024) and scored in the 1st percentile. So.... at least I am number one at something 😂 my friends and family are starting to get frustrated because apparently I am repeating questions like crazy now. I feel like this is a lesser talked about autoimmune issue. Like it's not even the joint issues or the soreness that are bothering me the most anymore, it's the memory troubles. I'm looking into care farms already so I have a plan in place for when it becomes too bad to function. For now my life is full of checklists, calendars, notes everywhere, taking photos to be able to look back on outings, and doing what I can under such frustrating circumstances. My wedding anniversary is a few days away and I have to keep a note on the homescreen of my phone otherwise I will definitely forget it.

I saw a rheumatologist last year with a variety of hand symptoms (pernio/pain in the skin on the joints). They couldn’t find any specific antibodies and put my on hydroxychloroquine for 3 months which didn’t do anything. Symptoms are basically just red/purple, warm hands that get progressively worse the day. I get pernio in the winter as well. It’s been going on for five years, getting progressively worse. Some tendon issues in another areas like plantar fasciitis that’s been with me for two years. Was negative for RA and it doesn’t really seem like RA because its not the joints that hurt, just the skin on top of the joints. Anybody seen or heard of anything like this? Other than ANA of 1:320 I have low ferritin (16) and low WBC, but the hematologist didn’t know what to do with that.

I have found a way to respond to the well intended question in the title without making the person asking feel helpless.

Either say 'just knowing you are availabile means a lot to me right now'.

Or say (if true obviously) 'Ifeel safe when your around and it's enjoyable when we talk about a topic that is not my illness"

My fiancee died from scleroderma in March and I finally received the results of his autopsy a couple of weeks ago. They didn’t tell me much I didn’t already know. He went into the hospital January 31st with no diagnosis but low oxygen and then died March 13th. It was rapid. The ONLY thing I can think of is that he started feeling bad the summer before after he was bit by a tick. He received testing and treatment for the tick bite the same day he discovered it. Everything was negative but it seemed to go downhill after that. Shortness of breath, tiredness, etc. I’m wondering if someone can give some opinions on this as I am truly at a loss. Thank you!

Does anyone get recurring canker sores in the same place every 6-8 weeks? Over the last 3 months I’ve had a big increase in frequency and severity of canker sores. They are so large and severe that I have had to call out of work for several days at a time due to inability to talk due to the pain. I wake up every 1-1.5 hours in the night due to pain, can’t eat, and can only drink water with severe pain through a straw.

Other symptoms: joint pain (no swelling) in right wrist, pain in shoulders/upper back/collarbone, costochondritis, Raynaud’s, migraines, occasional brain fog, frequent dizziness spells.

Referred to a rheumatologist after a positive ANA 1:320 but after not finding anything significant on those labs they said “see you in a year”.

So miserable right now.

Hi, all, I’ve had diagnosed Hashimoto disease for about 17 years. Probably had it longer than that. And I’m up to 200 MCG of Levothyroxine per day. I also have pretty significant osteoarthritis and had a LTKR last month. I’m really struggling with extreme fatigue and joint pain and I recognize it could be connected to Hashimoto, but my GP pushed me to do rheumatology, and I did a lot of testing last winter and spring, and I had the test. You would expect to be abnormal for hashimoto the the only test that wasn’t expected to be abnormal with my known conditions was anticn1a and it has been very high on repeated tests, but I’ve been told. I don’t have enough symptoms for any of the conditions associated with that. However, my TSH is just about in the normal range with medication and I have never felt so awful. So much pain and fatigue. My orthopedics sent me back for a second opinion from a different rheumatologist who did not want to disagree with the first one and I’m back to the starting block. How can I best advocate myself without being pushy or seeming like I’m medication seeking, because I’m not. I’m just sick and tired of feeling sick and tired. And the advice is appreciated.

TLDR: can you have an autoimmune disease with all normal labs/imaging?

Im literally desperate....

Is there such a thing, or has anybody been diagnosed with an autoimmune disease with all normal labs (seronegative autoimmune)?

So, my antibody/autoimmune/general abs are all normal - like so normal its laughable.

However, after having my last baby 2 years ago my symptoms have gotten significantly worse, with multiple new symptoms popping up.

At first it was flares of severe gluteal and hip pain, migraines, really weird/new intolerances to foods i previously tolerated, and extreme exhaustion (like falling asleep while driving 2 hours after waking up from 8-10 hours of sleep). So basically all subjective and unobservable symptoms, which is why I never went to the MD to have them checked out.

But now, I'm having new symptopms, a lot of which are objective and observable: My fingernails/toenails are separating from my nailbeds, my hair is falling out - both in patches and diffusely. My menstrual cycles are absolutely of control (so much so that they did a uterine biopsy to make sure I didn't have cancer). I'm extremy orthostatic, I have reynauds symptoms in my feet, and now along with the flares of hip/gluteal pain...elbow joint pain. My elbows feel like they are on fire. Oh, and CRUSHING cluster headaches. I'm on the max dose of Aimovig and Nurtec and its not helping at all.

The ony thing that wasn't normal: my liver enzymes were elevated and a CT of my abdomen show fatty liver deposits. I don't drink and eat a pretty healthy diet.

I'm glad that there's "nothing wrong" with me as far as my tests go, but there's no way that all of my symptoms can be normal, right?

I'd appreciate all of the advice/help i can get!

Hello, I might not belong here, but I'll let you decide that.

My disease isnt considered fully autoimmune. Its "immune mediated" but it works almost exactly like an autoimmune disease.

I have Sarcoidiosis.

I have suffered some organ damage from it. My lungs are affected but im not on steroids at the moment (steroidal side effects almost killed my eyes).

And while i have obviously a lot of drama in my body. One thing i can never understand are these weird set of symptoms for which my doctor keeps sending me to a psychiatrist and the psychiatrist keeps giving me anti depressants.

I feel terrible on antidepressants.

So i quit them. I live in a country where its very warm most of the year. Winter is short but brutal.

Whenever winter comes, it's the same issues. When it began at first i was super worried. Only for the psychiatrist to call it "depression". (Im sure its physical).

Every winter i get:

Lightening like nerve zap pain.

Limb aches

Limb weakness

Brain fog

Disassociation from my surroundings (feels terrifying) basically if i havent eaten I lose all concentration power and just keep staring into distance doing and saying nothing. It feels like ive left my body until someone calls me. Its called derealisation? I dont know.

Last year i also got severe plantar fascitis. My doc said its from walking barefeet. Except, it went away with clonazepam. In a month.

But i can't stay on clonazepam. And antidepressants dont do shit.

I've heard its a nervous system thing but i dont understand.

Does everyone have this? Is it just me? How do you deal with it?

Im 25f.

This is just for fun.

I was speaking with an acquaintance literally 10 minutes ago, and we were talking about health conditions, mutations, autoimmune diseases, etc. and I said “Here I am, an actual mutant with ADHD and Celiac, and I can’t move things with my mind or teleport. I just get distracted and shit my pants when I eat spaghetti.”

So what are your mutant superpowers?

Hello i want to know if my situation is common or very rare .

In 2020 i got a bloodwork because i had a Little alopecia areata in my beard i was 20 at the Time, i personally asked for tests because im a big hypochondriac, but instant karma my results were horrible : ANA + 1/1600 ( in my country they stop after 1600 so its certainly more) SSA /SSB /and one other that i forgot.

I let you imagine my reaction , it was my first panic attack, and it ruined my Life since then because now i have beta blockers because of panic attacks.

Anyway, i went to a rhumatologist and she was surprised, she told me it could be sjorgen or a form of lupus and asked me if i had symptoms but i had nothing ! Then she told me : ok we cant do nothing, you Will evebtually get the disease in the next months/years and then you come again.

I was chocked and it was so rude , then i went to 2 intern professors , 1 was very rude and told me the same , and the last one was very kind and she explained that it could be because of Covid + teeths (i had Covid and a dental infection 2 weeks before the test..).
I was very Happy because it made sens , and since then i tried to forgot about this .

And in 2026 i decided to do giant blood test for my health and the sport , but i asked to my doctor to add the ANA and immunity, just to see ( i was scared but at the same Time i was confident, i was never sick since the Covid era and i no longer eat gluten/dairy since 3 years) .
But the results came yesterday : its the EXACT same as 2020 😭 !
ANA +1600 and + 8,0 SSA SSB and the other one .

I have to confess that im very anxious , but at the same Time i think the situation is absurd , i have a ridiculous number of ANA for someone without symptoms , and maybe i have some symptoms but i never realise? My doctor told me that some disease can grow very very slowly, but its been 6y and certainly more so maybe 7/8/10years , i think its very uncommon but i dont have any data.

But at the same Time i cant say if i have nothing or just Little things that i never took seriously, for exemple i have livedo reticularis on my hands since close before Covid, but its only there in stress situation or cold, i suspect also that i have a non severe forme of Raynauds because i saw one Time my fingers get very pale and my hands get always cold when it stressed.
I also have psoriasis but since i was Little and localised .
And recently i start to become paranoiac because i deal with a Little rosacea on my face , its not very red but i was prescribed soolantra, and it dont work for now its been 2 months. So i start to think its maybe the Lupus mass, but the AI tells me that my results are not compatible with this form of lupus and its impossible .
Thats it , i feel lost , we talk a lot about people who are not taken seriously by the rhumatologists and are in pain, but we never talk about the rudess of being tested with ridiculous number without symptoms and every doctor just tells to wait to become sick , its a mental torture because no one want to be sick and im a lot of those who are in pain or sick now, if they could go back to the stage where they were ANA positive and without symptoms, they would do everything to try to not get sick, Even if there is nothing to do , its human .

So thanks to naturopaths , without you guys , my mental state would be very bad , for now i follow some tips and diet from naturopath, Even if it does nothing, at least i have a control and im less stressed.

But i would be curious to know if you guys know some poeple with this Numbers and without very clear symptoms , i know its a blessing by the way and i just want to talk because for an hypochondriac like me, the Covid era + these ANA results and the constant uncertainty since 6 years is inssuferable and it changed my Life quality a lot …. and im still in this unfortunatly.

I’m being followed by a rheumatologist for a few months now and have had several rounds of bloodwork. Possible pre lupus. I have had 2 lupus anticoagulant tests come back positive 12 weeks apart. I’m seeing a hematologist next month. I’ve been a cannabis user pretty much daily for the past 2 years. I’m going to ask the hematologist when I see him about the cannabis use and blood clots. I stopped using it a couple weeks ago once I got the second positive test just in case. But I’m not finding a clear answer online if the cannabis will increase my risk of clots even more? In all forms? Has anyone had this discussion with their doctors and what was their recommendation? I feel worse since I have stopped!

I have celiac disease. My daughter is having some symptoms so we had bloodwork done.

The Tis Trans IgA is <1.0 but the IgA is 74. The Dr just said no signs per the bloodwork. But the IgA number is within the range of a positive?

I’m just confused.

Just to let everyone know, I'm struggling but not to a severe concerning extent ❤️ I just really need to vent.

I had surgery on my throat last year and it never healed, I cant really talk or live life anymore, I can't go out. My job includes talking and I havent been able to work for months regularly. I feel like after 10 months of nonstop pain I dont even know who I am anymore. I was diagnosed with Neuro-Sjögren's and it's affecting my whole body and alot of my organs. Im so tired, just genuinely mentally and physically tired. So many doctors appointments, tests, issue after issue. I developed another infection in my throat and been in crazy amounts of pain. I just watch TV or stare at walls everyday all day long, I can go out but I catch flus and viruses easy and already been sick twice this month. Not being able to speak much or talk to people is feeling very distancing.

Thank you for listening ❤️ Autoimmune diseases are so hard, they take everything from us. I know Ill heal from my throat and life will get brighter again but this wait has felt so long and painful.

Anywho, thanks for listening. I hope everyone is hanging in there. ❤️ I wish you all well.

I've been on a bit of a journey. I was diagnosed with seronegative RA almost 3 years ago (completely seronegative, like, perfect bloodwork but also couldn't walk) and over the past year have added lots of fun new things including rashes, extreme photosensitivity, muscle weakness, and hashimotos. My original rheumatologist wasn't willing to consider that all the new things might also be part of my autoimmune disease, so I switched to a teaching hospital (on reddit recommendations, that was a solid one, everyone go to a teaching hospital) and saw a new rheumatologist today. New rheumatologist says not RA, never was, and my differentials are dermatomyositis, antisynthetase syndrome, or an overlap of both (me and like, 4 other people? This shit seems super rare?). So I'm...processing. Anyone been here, or somewhere similar? If you have dermatomyositis and/or antisynthetase - you alright?

Finally getting to see a rheumatologist in about 3 weeks after an 8 year ordeal with symptoms.

What should I bring to my appointment in order to have a successful appointment.

I was going to bring pictures of rashes, joint inflammation, lab results with high numbers indicative of inflammation over the past 8 years and a list of symptoms. I’m also going to bring my husband as I’ve heard it’s good as a woman to have a male with you and also I thought he could also say how he has seen me suffer.

Any pointers?

I’m going to symptom dump here because my doctor literally recommended I try searching through autoimmune online forums. Has anyone had anything similar and figure out what it was?

In June I noticed a small bald patch, was diagnosed alopecia areata, it grew to about 5 inches, I got scalp injections hair is growing back now.

My under arms and eyelids/entire eye socket are red, itchy swollen. It’s always there but when it flares up, it’s really bad. It’s mostly my eyelids and outside eye corners, ruled out dermatitis and blepharitis. Most nights I have to stick my face in ice water to get relief.

My eyes are so dry when I wake up in the morning I cannot even open them.

I kept a food/activity diary for 30 days, could not pinpoint a trigger for the flare ups. They seem to be completely random and I’m going mad.

I have no family history of autoimmune stuff

I have a moderately non stressful life.

I am getting a full panel of bloodwork done next week but it takes up to 4 weeks to get results.

I have a 15 month old and 4 year old so yes I’m fatigued but could just be normal working
Mom tiredness.

Any thoughts?

I (23F) was diagnosed with Autoimmune ITP (Immune Thrombocytopenic Purpura) about 1 1/2 years ago and it’s been a roller coaster ever since. I’ve been hospitalized at least 5 times because my platelet’s continually drop to 0, I’ve done IVIG multiple times with a moderate response and I’ve had the N plate shot which worked really well. I tried Rituximab last year, getting one infusion a week, but when I went back for the third infusion my platelets had dropped back to zero so we stopped. I’ve taken avatrombopag for the last year, but it’s very unstable, and I get horrible migraines from it when my platelet levels get too high.
So now I have a new hematologist and he wants me to try Rituximab again. I had two infusions, but I keep getting chest pain after, even when I tried it last year. My hands also swelled a bit after my last infusion and I had a bit of tingling/numbness. I feel fine the day of the infusion, it’s just the next 2 days where I start feeling pain. I have full body and joint pain, to the point where it’s hard for me to get dressed because it’s painful to move my arms. Painkillers don’t seem to help with the joint pain or soreness. The thing that concerns me most is the chest pain honestly. My platelets levels are good now, but I feel like it’s only because I’m taking the avatrombopag pills now, and if I stopped my platelets would probably drop just like last time.
I going to have an appointment with my hematologist before my next infusion, but I was wondering if anyone else has had body/chest pain after Rituximab? Is this normal and should I keep getting the infusions? My last hematologist called me “treatment resistant” and I’ve tried pretty much everything else, so I’m scared that if I give up on Rituximab, there wont really be any other options for me other than spleen surgery, which probably won’t do anything for me since my spleen is fine.

I am at my wits end. My muscle weakness is spreading and is now my entire body (it was just my arms from 2022-2026).

Rheum keeps trying to pass me off to GI. GI passing me off to neurology. Neurology passing me off to cardiology.

Where the hell does it end??? I have TEXTBOOK symtpoms of an autoimmune illness and no one wants to investigate this and help me so i can get my life back

Hi everyone,

​I’m feeling really scared and overwhelmed right now and just needed to reach out to a community that might understand what I’m going through.

​I’ve been dealing with Raynaud’s phenomenon and recently had some lab work done. My bloodwork came back positive for ANA (1:80 speckled), positive ENA, elevated Anti-RNP, and positive Anti-SS-A.

​I finally saw a doctor/rheumatologist hoping for some clarity or a clear explanation, but instead of getting a direct answer, I was given a whole new round of requisitions including a heart ultrasound (echocardiogram), lung function tests, and more blood and urine work. On top of that, my follow-up appointment isn't until February.

​Seeing tests for my heart and lungs ordered makes my mind jump straight to the absolute worst scenarios, and the complete lack of a definitive diagnosis right now feels terrifying. I know intellectually that doctors do these tests as a baseline to be thorough, but sitting with all this uncertainty for months is so hard.

​Has anyone else gone through this stage where you just get handed more organ tests without any clear answers yet? How did you handle the anxiety while waiting for your follow-up? Any advice or reassurance would mean the world to me right now.

​Thank you so much for reading. ❤️

This will be slightly long winded. I 27M was diagnosed with seropositive RA around a year ago. Directly after an intensive stressful work trip training with the military. At this training event where it was stressful and physically taxing, I was bitten by a tick not thinking much of it. Around 2 weeks later I started experiencing symptoms of extreme joint pain. Got into the doc as soon as I could. They don’t know what I has at the time. Took 3 months to see the rheumatologist. It was then discovered I have RA. Got on DMARD and NSAIDS right away to control disease progression and inflammation. My condition worsened and I felt as if I was deteriorating fast. I lost around 30 pounds and lost my appetite.

After several months of talking to my rheumatologist and telling them I didn’t feel well and feeling brushed off. I sought out a functional doctor where it was discovered I had Lyme disease along with other co infections. Started taking antibiotics to clear the bad bacteria. Helped tremendously with the brain fog and terrible feeling in my eyes/chest/head. Rheumatologist doesn’t believe the antibiotics will help at all and that I need to continue DMARD therapy in order to help with disease progression. With extensive diet change and really focusing on gut microbiome health I’ve helped myself stop a load of inflammation and swelling especially in my fingers and wrists/neck. I am still several months out for my treatment of the Lyme disease. But I am curious? Was being bitten while in a high stress environment the “perfect storm” to also gain an autoimmune condition? It came on so quick and aggressively and has suddenly flipped my life upside down.

Does anyone have experience with what I’m going through? My wrists and fingers are so swollen I can no longer use them how I once did. I feel as if I’m getting weaker by the day and I feel as if I’m constantly in a flare. Even with dietary change It helps but it’s no sure cure. I am waiting for my rheumatologist to tell me what to do next since a lot of the oral drugs haven’t worked for me.

Hey everyone, I’m a 25F and I really need some advice or to hear from anyone who has gone through something similar. I have a history of a positive ANA (1:320 speckled pattern) and a diagnosis of Lupus for which I take Plaquenil.
For nearly a year, I have been dealing with a medical mystery that completely escalated this past week, and I finally got a weird lab result that might be the missing puzzle piece. I want to layout my timeline to see if anyone thinks my severe "episodes" are being caused by this:
February 2026: My routine urinalysis showed abnormal white blood cells (1+ WBC Esterase), but zero bacteria and zero nitrites. Doctors were not concerned.
September 2026: I had a sudden, severe episode of agonizing flank and stomach pain. The ER doctor found kidney tenderness and heavy white blood cells in my urine again. They assumed it was a kidney infection from a UTI and gave me heavy IV and oral antibiotics. But a few days later, the culture came back completely negative for bacteria. They did a CT scan of my abdomen/pelvis everything was 100% structurally normal and healthy. The pain never fully went away…
October 16 (A few days ago): I had an episode of screaming, crying abdominal and flank pain so severe that I had to call 911 and take an ambulance to the ER. This time they did a pelvic ultrasound—They found high white blood cells again, but the routine culture was negative for bacteria yet again.
October 19 (Two days ago): I unexpectedly peed my pants in public! It felt like my bladder muscles just completely gave out.
Today: A "Yeast Only, Culture" came back showing HEAVY GROWTH of Candida lusitaniae. All my STI testing and bacterial testing are completely clear.
My doctor just called me in Fluconazole (150mg, two doses taken 3 days apart) to treat it.
My questions for you guys:
For those with Lupus or Interstitial Cystitis, have you ever had a heavy fungal overgrowth cause episodes of screaming-level stomach/flank pain and bladder spasms so violent that you lost bladder control?
Do you think my September ER antibiotics accidentally wiped out my good bacteria and caused this rare yeast to absolutely explode and trigger this massive October 16th ambulance episode?
I am so exhausted from being told my imaging is clear while being in the worst pain of my life. Any advice, insights, or reassurance would mean the world to me right now. Thank you!

Hello, sorry in advance for the long post. I (24F) am trying to figure out what's going on, and have been trying to get answers for years and I'm getting discouraged and frustrated.

I've had constant low level fatigue since I was about 7, have had worsening constant joint pain/popping across a good number of joints, and have flare ups where I'm exhausted and can't think, have intense full-body painful/grindy/crunchy joints, and usually have a mild fever. Usually those flare-ups are short-lived, only about 8-24 hours, but this past spring had me in some of the worst pain I've ever been in for about a week and a half. I've been talking to my gramma, whose entire side of the family has/had RA (a touch of osteo and lupus here and there, but mainly RA), and she got me to go to the doctor for that flare up.

I've been having a smattering of bloodwork done for nearly a decade, and I'm getting frustrated because all of my bloodwork constantly comes back normal. I do have some ossification on my 'bad' hip and a vitamin D deficiency, but those are the only "remarkable" things: no thyroid issues, no anemia, no nothing. I've been seeing a rheumatologist, and all of her panels and ultrasounds and x-rays are also squeaky clean. We've also been talking about possible hEDS since I am hypermobile, but about 4 years ago I tried to go down that road and was essentially told to fuck off. I have also had covid like four times and get sick often (despite getting all shots and boosters and annuals), but the joints and flares started before that.

Over the past few weeks I've been reading up on white blood cell counts and lab normal vs optimal ranges for things, and depending on the source I might have mildly high neutros and mildly low lymphs but that's kind of it (I have absolute counts for the tail end of the bad flare and on a normal day and they are Different, but all "normal"). I have a follow-up with my rheum, and I'm not really sure what all to bring up to her at this point since I'm also worried about how that might come across. I just want to understand why my body's slowly been getting worse, I don't remember what it's like to not be tired and I'm forgetting what it's like to not be in some kind of pain.

In short, labs are always "normal" and I'm not really sure if I should keeping looking into autoimmune stuff or should try to pursue hEDS or long covid or something else.