Hi everybody. 29F here. I’ve been chronically ill my whole life and was also diagnosed with psoriatic arthritis in my early 20’s. Stupidly, I thought that surely lightning wouldn’t strike a third time, but alas- I might as well be a kite in a thunderstorm.

Over the last year and a half, I’ve lost 150lbs and started working out 2-3x weekly. At first Pilates was difficult but manageable, then it started to get easier the more I trained- until it didn’t. It started to feel harder again. I especially struggled with lifting my arms overhead and hip exercises. I asked my physical therapist, who told me my hips are still very weak- something that feels like it shouldn’t make sense considering how I’ve been training for a year now.

My PCP flagged that my wbc was a little bit low around July, and we assumed I was recovering from a cold or something. Then, in August, repeated bloodwork showed a sudden sharp drop in my WBC and ANC- 2.2 and 1.0 respectively. She sent an urgent referral to a hematologist and rheumatologist. Upon reviewing my records, it appears that my WBC began a slow but steady decline around summer 2025. It never recovered or went up, just slid down. My WBC had previously been at 5 for years, so this is a huge decrease for me.

Then, my most recent blood tests showed low RBC, hemoglobin, and hematocrit- and my platelets, although still technically normal, have dropped by more than 30% in a month.

I started to feel awful all the time. I feel weaker- when I try to do Pilates, my legs would shake so bad by the end of class that I can’t even finish the class out. I became massively fatigued, but sleep has become harder for me, too. My whole body started to hurt, even the hairs on my head hurt when I wear a slouchy beanie for more than an hour. My feet swelled up at one point, becoming noticeably puffy, but have since returned to normal. My periodontal disease became active again, too, and my migraines have started more frequently.

They’ve run almost every test imaginable, and the only positives have been weird ones. First off- I’ve had a positive ANA my whole life. It’s always been either 1:80 speckled or 1:160 speckled. Now, I get this result- 1:160 nuclear dots pattern, which is apparently typically associated with Primary Biliary Cholangitis- a condition that wouldn’t even cause my counts to drop, which is what we were investigating in the first place.

My doctors told me they had no idea what that result meant. Including my rheumatologist. More than one said “oh they must have meant speckled” and I had to explain that it was an entirely separate ANA pattern. My rheumatologist straight up refused to do antibody testing for the antibodies associated with this pattern, saying “that’s not my specialty.” My hematologist ran some blood tests and did a bone marrow biopsy, all of which came back negative, so she said “maybe you’re just like this now.” Like, fuckin excuse me? I’m just like this now???? BUT WHY???? She told me there’s nothing she can do and dismissed me with no answers.

Luckily I have a stellar PCP who has taken it upon herself to run all of the tests the other doctors should have but didn’t.

Positive tests:
ANA 1:180 nuclear dots pattern
131 Fecal Calprotectin
1:40 ASMA
Skin biopsy confirmed psoriasis
Elevated MCV
Low WBC, Neutrophils, Hematocrit, Hemoglobin, and RBC.

Negative/normal results:
Lupus panel
Sjogren’s panel
Scleroderma panel
Salivary gland biopsy
Bone marrow biopsy
ESR and CRP are low, no inflammation
AMA
All liver enzymes are normal
Kidneys are working great
Muscle enzymes normal and unchanged
DAT/Coombs
LDH
Haptoglobin
All nutritional studies (b12, iron, protein, etc.)
Colonoscopy/endoscopy with biopsies
Normal Reticulocyte count

Symptoms:
Body aches
Joint pain and stiffness
Dry eyes and mouth
Fatigue
Muscle weakness
Nausea
Loss of appetite
Symmetric feet swelling
Migraines
Exercise intolerance
Bloating

And today I finally got tested for the two antibodies typically associated with the nuclear dots pattern- NXP-2 and SP-100. Im scared. I just want to know what’s wrong with me so we can treat something. I feel like I just keep getting sicker and my quality of life is already poor, I don’t want it to get even worse. The conditions associated with that ANA result are very serious but none of my doctors seem overly concerned about it. It’s obvious something is wrong but the only positives point towards a liver condition I don’t meet the diagnostic criteria for and that wouldn’t cause the blood count abnormalities I have.

I have an appointment with a new rheumatologist in Nov 5 and that’s the only thing giving me hope right now, but I’ve been dismissed by so many who were supposed to help me that I’m scared it will just happen again and I’ll be left waiting until I’m in a medical crisis for anybody to figure out what’s wrong with me.

Can anybody else relate to this? What did you end up diagnosed with, what tests did they run? I just don’t want to be in pain anymore. I’m scared the future I wanted- to be a mother- is slipping further from my grasp because I can’t get pregnant if my health is this poor and I have no answers.

Anyway, thanks for reading. Stay strong everyone.

Hi everyone! I'm 31F, and I'm currently going through a difficult diagnostic process. I'm hoping to hear from anyone who has experienced something similar.

For months, I've been dealing with multiple symptoms that have significantly affected my daily life. Lately, I've become so physically exhausted and weak that I spend most of my time in bed. Sometimes even walking around the house or holding my phone feels exhausting.

Some of my symptoms include:

• Extreme fatigue and muscle weakness, especially with activity
• Heavy, weak-feeling legs and difficulty walking for long
• Occasional difficulty swallowing and a lump-in-the-throat sensation
• Feeling breathless with minimal exertion
• Dizziness, imbalance, and lightheadedness
• Brain fog and difficulty concentrating
• Occasional tingling sensations
• Rapid heart rate, sometimes while resting or sleeping
• Chest discomfort, muscle aches, and nausea
• Feeling physically drained even after resting

My testing and diagnoses so far:

I've had numerous ER visits, EKGs, an echocardiogram, heart monitoring, routine bloodwork, and neurological imaging.

My echocardiogram was normal, and much of my routine bloodwork has been reassuring. My recent heart monitor recorded my heart rate reaching 189 bpm.

My cardiologist suspects inappropriate sinus tachycardia (IST), and POTS/dysautonomia has also been discussed. I'm currently taking ivabradine.

I've also had brain MRI and vascular imaging that reportedly came back normal.

I'm currently undergoing further neurological evaluation, and bloodwork has been ordered to investigate possible myasthenia gravis and other causes of my symptoms. I have not been diagnosed with MG.

The hardest part is the uncertainty between appointments.

I genuinely feel unwell almost every day. Sometimes I feel too weak to do basic activities, and I've started relying on a wheelchair for longer outings because I get exhausted so easily.

I also struggle with health anxiety, which makes it difficult to know when a symptom is something serious or when my nervous system is amplifying how I'm feeling.

I've visited the ER multiple times, and I'm often told my immediate testing looks okay and to follow up with specialists.

It's frustrating because I don't want to keep going to the ER unnecessarily, but I'm also scared of ignoring something important, especially when experiencing weakness, breathing discomfort, or swallowing symptoms.

My questions are:

1. Did anyone with MG initially experience generalized weakness or fatigue before receiving a diagnosis?
2. Did your symptoms fluctuate throughout the day or worsen with activity?
3. Were your routine bloodwork, MRIs, and cardiac tests normal before further testing identified the problem?
4. Did anyone experience POTS, IST, or dysautonomia alongside an autoimmune condition?
5. How did you manage your symptoms while waiting for diagnostic testing?
6. How did you work with your doctors to decide when symptoms required urgent evaluation versus monitoring at home?

I'm not looking for anyone to diagnose me. I'd just love to hear your experiences and how you handled the uncertainty.

I'm mentally and physically exhausted and just want to feel like myself again.

Hi, I’m 34F and have always been a very active person all my life. In the last two years, I felt my energy levels decreasing a lot but I just thought I was working too much. This year, I started getting knee pain and stiffness which I thought was because of the gym. A few months later, other joints such as my other knee, my elbow started getting affected. I also felt tremors at times, especially after using my arm for something simple like straightening my hair. Have had terrible hair loss too. Random swollen face on days, sometimes swollen legs and feet. Plus lots of stomach issues. Went to a consultant. She got extensive testing done based on my symptoms. Turns out I have anemia which I’m getting infusions for. But my ANA is also high. It came out 1:320 homogenous, and I just repeated it with another lab to rule out a mistake and the new (better) lab gave 1:640 homogenous. My consultant is great but the rheum dismissed me with possible fibromyalgia. My pain just isn’t settling and recently my back has also started hurting. I have days when I feel better and then I crash again. I no longer work full time either. All my other tests, anti dsdna, ENA equinox panel, liver, kidneys are clear. Heart function is perfect but they found a minor mitral valve leak and a hockey stick appearance of mitral valve. The cardiologist told me it’s nothing to worry about. At this point, I don’t know what to do. Also, I’ve always had dry eyes but now I have a very dry mouth too. Has anyone else been in a similar situation? And how did you proceed with it? Thanks!

I was recently diagnosed with complications of Psoriasis.

Specifically, ocular. My left eye has been extremely red, sensitive to ALL light and worst of all? Chronic uveitis.

Been 2 years now and finally found the cause last month. I’ve been kind of reeling from it. 100% expecting this to be resolved with either surgery or medication.

None of that is going to work. Only management to keep me from losing my eyeball. 👁️ (there should be other colored eyes.)

Anyone else diagnosed with something like this? I wasn’t even given a name for it lol just a general “uveitis” diagnosis 😭😭😩😳👁️👄👁️

Wondering if anyone here has been diagnosed with lymphocytic hypophysitis?

I was diagnosed in 2013, two months after giving birth. I’d begun losing my peripheral vision and was shocked to discover it was due to what doctors thought at the time was a pituitary adenoma. I had surgery on my pituitary which restored my vision, but only after pathology came back did we learn the root cause was autoimmune lymphocytic hypophysitis, not an adenoma. I was so scared I’d have to replace a whole host of hormones after having my pituitary carved up like a Christmas ham, but I got lucky and thus far have only required levothyroxine supplementation.

I’d love to hear anyone else’s experience, particularly in regards to whether you ever experienced recurrence after successfully concluding treatment? I was under the impression that the surgery would be the end of it (as long as I never became pregnant again) but I’m starting to wonder if I’m experiencing a recurrence and am dreading going through the whole ordeal again (though I guess steroids are the first-line defense so hopefully no surgery again). Anyway, would love to find some community, and am interested to hear your story!

hi! tldr for context:

i saw a PCP who did my labs and i had positive ANA so i got sent to a rheumatologist who basically said (poorly paraphrasing) that he thinks based on my symptoms that i could have psoriatic arthritis. for additional context, i believe that i may be suffering from pain as a result of hypermobility and possibly hEDS but idrk because im not a doctor.
anyway so the rheumatologist gave me some prednisone to test if that helps and basically after said that i should get on hydroxycloroquine to see if it helps without running any additional tests except blood work which i had already had. i decided not to take the medication and i ended up moving states, getting a new job, etc.

THAT ALL BEING SAID, im looking for advice on next steps. should i seek out a rheumatologist in my new area first since ive had all these previous background tests or should i start with just finding a PCP or like both at the same time? my insurance does allow me to go to a specialist without a referral

thanks for any advice!!

I still feel awful. Mostly fatigue, body/muscle aches (seriously, even my hair hurts), brain fog, inability to sleep. Along with UCTD/leaning towards lupus, I also have fibromyalgia. My rheum says fatigue is the hardest symptom to treat. I'm on Adderall now so I'm able to function enough that I can imitate a normal human woman at work, but I'm still just absolutely wiped every single day. My brain is so slow, I'm constantly forgetting important things and I can't even remember simple words a lot of the time. I feel bad for my boyfriend and Mom and friends because after working an 8 hour day I'm literally incapable of doing anything but rot on the couch. I can't even stay awake to watch a show or movie. But then when it's time to go to bed I can't fall asleep to save my life. And when I do sleep, I'm usually awake within 1 to 2 hours. A lot of the time it's from the pain, but sometimes it seems to be for no reason. I'm averaging 4-5 hours of broken up sleep a night. I don't know the point of posting, I think I'm just getting very burned out from never feeling well and I'm absolutely burned out because I feel like I'm always at the doctor's, and I'm taking so many meds to treat my different health issues. I'm just done. I have an appointment on Friday to check basic things like iron/ferritin, thyroid, vitamin d, etc. I'm hoping there is a simple answer. Thank you for allowing me a space to rant.

Does anyone have a recommendation of a rheumatologist that is an expert/specializes in treating dermatomyositis in the DMV area -

I know some trek to UPenn or JH, but was hoping there are great doctors in the area.

Thank you in advance!

How do you all track flares and is it effective? Like have you been able to pinpoint triggers?

Explanation first Bro I’ve been feeling like I’ve been dying for a while and it just keeps getting worse I have like 5 paragraphs of symptoms but I’m most worried about urinary stuff I have been experiencing uti like pain and discomfort for a while and I went to the hospital 3 times all bacteria culture came back negative so the doctor at the hospital told me it’s internal/lupus cystitis and I went to my rheumatologist hoping to get some help this was my first appointment I had to drive 1 and half hours to drive there and bro told me I have to go see 3 more specialist till I can see him again like bro I think I’m gonna pass (only the rheumatologist can prescribe it and also I have to consider so many other risks I just found out if u have (hsv/herpes) the steroids can compromise ur immune system and it can spread to ur brain) I have to wait so long to get predisone or another steroid I really gotta see a urologist, a optometrist to test me for dry eyes for strogens and a dermatologist to see if my 5 skin conditions have anything to do with my auto antibodies that came back positive I have positive ANA and Anti-RNP my doctor diagnosed me with SLE and I have to wait 6 more months to see the rheumatologist again like ur joking I don’t even know if I’m gonna live that long I’ve lived with undiagnosed lupus for like 4 years and I sleep 12 hours like every day because of the intense fatigue and pain no the emergency not gonna do anything just wondering if anyone else’s rheumatologist so booked and u gotta wait 6 months to see him again

Hello everyone! I am honestly just tired at this point of my health journey and I’m not sure if I should continue pushing to get more test or leave it to the unknown. I’m 28 F and last year I had initially seeked answers to why am I so fatigued constantly. I had my thyroid checked and a sleep study done with normal results. I also did have issues with my joints hurting and stiffness but it didn’t seem to alert my dr at the time as it was occasional along with few GI issues I kept sweeping under the rug. Then I got a kidney infection and went into early sepsis. Since then I’ve been chronically fatigued. I feel like all those once in a while issues I listed previously are more like every week or daily. I’ve since had a constantly high CRP for about a year now, recently found my IGa is high and had my ANA checked twice now the first one was positive with a 1.4 titer nuclear speckled, but now after checking again is negative. I seen a Rheumatologist earlier this year who thought my pain was result of my body still recovering from my infection as my autoimmune panel came back negative. I’ve been working with a GI provider as I’ve had on onslaught of abdominal pain since earlier this year. A lot of my test have come back negative recently when trying to figure out if this inflammation is autoimmune, GI related or just something I will have to live with. It also doesn’t help that some important test to see if inflammation is in my gut from a stool study got lost at the lab. So I had to do a CT scan this week just to find nothing. Honestly, I’m just so tired of being afraid to eat and to push my body into activities as I regret it for several days after. I keep asking am I just worried for nothing, and want to just drop it at this point. But I did drop my health problems previously and went into sepsis so… I don’t know. Just hoping to hear some outside perspectives and hear about others stories on their health journey.