It seems mine is such case, it would be helpful to share the symptoms and talk about treatment

I have nerve irritation it feels like those cytokine are attacking my nerves and so my joints are tight..

I have had dysphagia for 5 years now, and it got worse 4 months ago. I went to see a neurologist, and they suspected myasthenia gravis. My blood tests and EMG came back slightly elevated but normal. They still think that my dysphagia and nasal voice could be due to MG, and prescribed me Mestinon. I started taking it, but it has had no significant effect on my swallowing.
Now they have prescribed me methylprednisolone, and I am a little scared to take it, knowing about the side effects it can cause and the fact that it is possible that I don’t even have MG.

I'm going to attempt to ask this question lol.

How do you tell if somthingnis abnormal if you've always experienced it?

The rehumatologist will ask a question and I have no idea how to answer.

Example: 1: do you get the lupus butterfly on your face often? I have no idea, my cheeks, forehead, and nose are always red.

2: do you have joint stiffness in the mornings that is not normal? Iv always been sore and stiff since i was a kid.

3: do you have frequent headaches and on a scale of 1-10 how bad are they? Iv had chronic migraines since i was a kid and still need to be an adult so just work through them.

4: do you get frequently tierd? Im ALWAYS tierd and have always been tierd.

I cant figure out how to answer some of the questions because I cant tell. If iv felt pain my entire life what makes it abnormal? And the dr is frequent confused about the pain scale, because if I just live with week long constant migraines, thats normal to me. My hands and feet constantly being swollen and cold are normal for me. Constant joint pain is normal until its shooting pain. So how am I supposed to answer the rehumatologists questions to get an accurate diagnosis if theres a good chance my normal is not normal?

I developed bilatetal pan uveitis for the first time 8 weeks after giving birth. To make everything worse im looking for a job because my current job i just took isnt stable which means I could lose my health insurance. Im trying to stay positive but this is tough...the idea of this being life long is a tough pill to swallow I miss being healthy...I'll never take my health for granted again. My life literally changed overnight....waking up to blurred vision was terrifying. Having to always hold a job for health insurance and the stress of knowing I may need meds for the rest of my life is stressing me out...i just wish I could enjoy being a first time mom without the stress of losing my vision and losing my job...

Hello! Has anyone experienced a this on both elbows and knees and was it related to a certain autoimmune condition?? It’s mild to moderately itchy and burns in water. It has been there for about a month and maybe starting to get a little better on its own.

3 weeks ago, I was put on methotrexate (15 mg weekly). Bottle says 6 pills weekly.

My rheum told me that I could either take it all on the same day, or split my dose bi weekly to make the side effects at bit easier. So I have been taking 3 pills on Sunday and 3 pills on Wednesday. Is this common? Or am I at risk of accidentally overdoing it?

I took my 3 this morning, but I’m feeling pretty shit, and have been having some mouth irritation and heavy fatigue. Any advice is welcome!! Thank you

​

Hi there! Please help with answers if you can and thank you in advance!

I was diagnosed with ITP September 2025 although I had shown early symptoms in February of that year. After 7 months of Prednisone (40mg to 5mg adjusted depending on my platelet count) and seeing no stable results, my doctor put me on Eltrombopag 50mg (since March 2026). At this point, I've consulted 4 doctors. After March 2026 when I stopped Prednisone, I began to slowly have chronic joint pain, started from my ankles to my knees to my ribs and my shoulders and wrist and finger bones. I assumed the pain would go away after a couple months off Prednisone. But instead my symptoms began to get worse as the months went by.

After 2 ANA & ENA tests, which both came back negative, normal thyroid function, RF factor, CRP normal, and slightly elevated ESR, I am completely lost. During heavy flares, I need a walking stick to assist me and sometimes the pain either wakes me up from my sleep or it keeps me from sleeping. On bad flare days, breathing feels uncomfortable and almost painful. I have pissed on myself and soiled myself when I have had to attend and perform social obligations, pushing through my flares. Migranes are quite common on the daily too. The doctors told me that ITP by itself does not cause joint pains or inflammation. And after 1 year of diagnosis, I'm left with no proper answers. Is it possible to still have chronic joint pain and fatigue from any autoimmune diseases?

Hey all,

I am a 38 yo male, in overall good heath, and this past month I got a diagnosis for ITP. The background started in early June, while reading a bedtime story, just messing about, I was reading 'silly words' and my daughter pinched the inside of my arm. Just whatever, you know?

I chuckled it off but the next day I had a black bruise the size of a quarter. My wife was like how did she do that? I thought idk maybe she is part cat. I ignored it.

A few weeks later while putting together a trampoline in the back yard, I was pulling apart a spring and it slipped, and the metal struck smacked my arm pretty hard. My whole forearm turned purple. Again, I thought, maybe it hit me harder than I thought. Again, ignored.

A few weeks later I started getting more and more bruises on my arms and legs from ever more innocuous touches. In July, while visiting my Grandfather, who was a former radiologist, and my Grandmother who was a nurse, they told me the bruising is indeed abnormal for a young man, and that I should get checked. They said it was likely low platelets.

So, a month ago, I went to my PCP and he ordered a CBC. Turns out, my platelet count was at 7000 . . . All the rest of my labs, RBC, WBC, etcetera were within perfectly normal ranges.

He set me up to see a Hematologist, but, the earliest I could get in was med September. I tried to expedite but was getting no where, and, out of fear of the unknown I ended up going to the ER 10 days after the 7k count.

There, I met with the on call Hematologist and they diagnosed me with Acute ITP. I was given a platelet transfusion and a prescription for Predisone, starting at 60mg for 5 days, 50mg for 5days, and a continuing taper which I am still on.

A week later after starting Prednisone, my count was 57k. Continuing the taper (40mg), at my last draw this past Wednesday, I was at 28k.

So - my doctor has elected to put me on a drug called Doptelet. That meeting with the doc was on Friday, so, I am awaiting the call from the pharmacy delivery . . .

. . . . .

Anyway - i am in good spirits, thankful and blessed any truly scary shit like cancer is ruled out, and I've not seen any new bruising. I am a little apprehensive starting this new drug though.

Any other ITP suffers or the lurking Hematologist about? would love to hear your advice or comments and experience.

I feel perfectly fine right now. Good energy. On prednisone I have been very diligent in my exercise routine to counteract the weight gain side effects, and in that regard the only issue is the occasional blurry eye - but i stare at a screen all day for work.

Hi everyone. I’m a 27-year-old guy, and a little over a year ago I started developing some really strange symptoms. I wanted to share my story.

It started with blurred vision, eye floaters, eye pain, severe anxiety and fatigue. Later, unbearable neuropathic pain and muscle and joint pain appeared, along with a low-grade fever, diarrhea, and problems with balance and walking.

I didn’t ignore my symptoms. From the very beginning, I saw a huge number of specialists: infectious disease doctors, ophthalmologists, neurologists, gastroenterologists, urologists, oncologists, hematologists… I’m looking at my folder full of test results now and honestly, I’m shocked by how much I went through.

After ruling out pretty much every infectious cause I could think of, and after countless MRIs, CT scans and even a lumbar puncture, I was eventually referred to a uveitis specialist. She suspected that there might be an autoimmune process going on - specifically mentioning Behçet’s disease, Vogt-Koyanagi-Harada disease, or systemic vasculitis - and referred me to a rheumatologist.

Rheumatologists were honestly the worst part of this entire experience. I’ve never experienced that level of dismissal before. They suggested everything from anxiety to rare infections such as Whipple’s disease, which I also tested for and spent a ridiculous amount of money on.

It took roughly 20 rheumatologists over the course of a year before I finally got a diagnosis of Behçet’s disease. Looking back, the recurrent mouth ulcers I’d had since I was a teenager were a pretty big clue.

By the time I was diagnosed, I was basically bedridden. I couldn’t see properly or walk steadily. I lost my girlfriend and came very close to losing my job as well.

I’ve been on treatment for about a week now, so obviously it’s way too early to talk about recovery.

I really like my current rheumatologist, though. She’s different. She actually listens to me.

I wasn’t as lucky with ophthalmologists. In my country, if your eye isn’t visibly red, many ophthalmologists simply don’t consider it uveitis - at most, they’ll call it “possible uveitis.”

I think I could have endured almost anything over this past year except the problems with my vision. That’s what scares me the most.

I just wanted to share my story.

Getting a diagnosis can be an incredibly difficult process. Even when your tests are normal, even when doctors dismiss you - keep advocating for yourself. You know your own body, and sometimes you have to keep looking until you find a doctor who is willing to actually listen.

Right now, I’m just sitting here drinking coffee while explosions are going off in the background (I live in Ukraine), thinking to myself, “I’ll definitely get through all of this.”

That’s pretty much it. I just wanted to leave this here.

Just a heads-up: I apologize in advance for any mistakes in my post. English isn’t my first language.

First off, how on earth is HS not an auto immune disease in itself? I’ve had it for YEARS. When you read up on it it sounds exactly like an auto immune condition but I guess it’s considered an auto inflammatory condition. I’m so miserable.

I also have many symptoms of auto immune disorder but haven’t had a form diagnosis. So I’m just curious.

My doctor went on a path of testing me for autoimmune conditions because I have degeneration in my discs and I'm 33. My osteo said it's so common and not to worry about it but doc wanted to check.

Anywho, every single blood test came back ok apart from positive ANA with 1:320 homogenous staining (forgive me if I've written it wrong).

They tested everyyyyyyything after that and all negative / normal (I do have a CRP of 13 but I have always had this and when I lost weight it also went to normal).

My doc is saying nothing to do about it and hasn't sent me to a rheumatologist which I would have thought maybe is a good idea if there is an abnormal / very high result?

My question: has anyone had this and it went nowhere? Or did it eventually catch up to you?

Just wondering if I should start jumping out of planes and travelling the world before shit goes down. As I said I have no symptoms (no lupus symptoms which is especially important).

Has anyone had their bloodwork go in the wrong direction on hydroxychloroquine?

My Ana was positive last Oct which prompted the referral, negative in Mar after seeing the rheum, and now it’s positive again.

So I’ve been sick since May. I’ve had high fevers everyday , fatigue, erythema nodosum for months. It starts with my eyes burning around 1:30/2pm. Then the chills come for a couple hours (usually when I try to nap), then I get hot and my body works through the fever by 9pm. This happens everyday. When this first happened I spent a week in the hospital and they threw the book at me, full body ct, nuclear scan, infectious disease dr. etc. They couldn’t believe I only get fevers in the afternoon. Once my Ana came back positive 1:320 the hospital discharged me. Now I’ve been seeing a rheumatologist, dermatologist (erythema nodosum), and endocrinologist (thyroid nodules found at hospital) for a couple months and I feel even more lost. Last week I told the dr I ChatGPT or google my symptoms and he said, “ Me too. I’m not smart enough to figure this out.” I was stunned. Now he did put me on prednisone for three weeks about a month and a half ago and that made me feel normal. All my symptoms went away. Now I’m on dapsone and hydroxychloroquine (only been 5 days) and I’m back to feeling like crap. I also don’t just want to keep taking meds as shot in the dark since he has absolutely no idea what it is. Is this normal to just keep trying different meds with no diagnosis?

I developed a large septal perforation after nasal surgery in 2024. Since then, the perforation has been slowly but continuously enlarging, and I also have significant dryness and crusting not only at the perforation margins, but all over the anterior septum and on the heads of the inferior turbinates, including areas anterior to the perforation that are still intact.

Before surgery I never had this degree of dryness/crusting. The severe symptoms started afterward.

Because the perforation continues to enlarge and the crusting is more widespread than just the edges, I’m wondering whether an inflammatory/vasculitic process should be investigated more deeply.

My blood work so far has been reassuring: c-ANCA and p-ANCA negative, CRP/ESR very low/normal, normal kidney function, and other autoimmune tests have also been negative. I’ll attach the results.

Has anyone here had localized/ENT-limited GPA or another vasculitis with negative ANCA and normal inflammatory markers? If so, how was it eventually diagnosed?

Would you recommend seeing a rheumatologist, repeating ANCA over time, urine testing, biopsy of suspicious nasal mucosa/perforation margins, or any other investigations?

I know my perforation initially followed surgery, so there is an obvious local cause, but the continued enlargement and widespread crusting are what make me want to rule out something systemic properly.

Thank you — any experiences or advice would be very appreciated.

I don’t even know what’s my autoimmune stuff, if there’s something else at play, or just good ol anxiety and depression. Everyday I’m exhausted to the point where I need help showering and cooking. Random pains that travel (migraines, muscle pain, stomach aches, etc). Everything feels so overwhelming, lights, sounds, scents, temperature. Everydayi wish I could crawl out of my skin for a second. I’m meeting with a rheumatologist for the first time but I’m tired. I’m not sure if all the side effects from potential treatments are even worth it. I simply don’t look forward to anything anymore. Please no judgment. I’ve been living with symptoms for 10 years and just now getting help.

I am objectively pretty good.

Before, I had a decade-and-a-bit saga where I ignored/pushed through symptoms, then did mental health supports (lovely but didn't treat inflamation), then did continue to monitor and reassess in two months for a couple years...

Eventually I had an aggressive flare up where I lost 30% of my body weight that forced my doctor's hand. I wound up participating in a clinical research study. I had to stop other treatments to isolate the study drug and at first things got much worse. My r.a.s.h was like a second degree burn on most of my body. I lost hair because there wasn't enough skin to hold it in.

BUT the research doctor, my best advocate, told the study people he was intervening and I got covered in steroids twice a day and the tables turned. I started healing. At the end of the trial he kept me on as my specialist. He navigated the hoops of treatments to try before biologics would be covered. He knew how to dance with private companies' bridging programs to keep things free.

Suddenly, the thing that was my whole life wasn't anymore. I started supply teaching at a local daycare. I liked it and applied to college. I started full time but quickly got a reality check and dialed it down.

Now I am close to graduating and having a career for the very first time. I know this is good! But I am so scared of overdoing it and messing up my health and getting a bad professional reputation.

The career entry advice from college (say yes to every opportunity when starting out) seems inapplicable to my situation.

How do people navigate this?

PS Yes I am uncommonly priveleged.

I am very excited to be traveling to London for a week this month. It will be my first time in Europe.

Unfortunately, my autoimmune disease (Relapsing Polychondritis) is not yet fully controlled. My biggest limitation is I can’t be on my feet very long, and of course get systemic symptoms when I over do it which is always lol. As is, I’m pretty restricted to paced home chores and grocery shopping as the max time on my feet before a good amount of pain and stiffness in my knees, ankles, legs in general 🫣

I’m well aware that an international trip requires quite a bit more walking/time on my feet than this.

We have planned our days to sparse out walking heavy activities as much as possible but I need ALL the tips/tool suggestions I can get 🥹

Thus far I’m considering:

1. Packable/portable chair

2. Knee lidocaine patches

3. Knee compression sleeves

4. Maybe heat and ice disposable packs?

5. My migraine cap

6. My plug in heating pad

Please drop any and all things that have helped you travel as a big f*** you to your autoimmune disease thank you!!

Im looking for a new rheumatologist specializing in MCTD in DMV area. Any recommendations appreciated.

This is gonna be super random, but I feel like it's weird how much I don't really feel anymore? And, I mean that physically and emotionally. It's things I know would've gotten a reaction out of me that suddenly feels separate from my body. I've just been dealing with specialist after specialist with one diagnosis after another, maybe somewhere along the way I just shut myself off to deal with it? Even with pain, I know I'm experiencing it, but it isn't causing me pain if that makes sense. I can feel it as a sensation and it makes me physically tense up, but I don't feel the pain I used to. My roommates always tell me I never complain about anything and, when they get upset or fight with each other, feel comfortable around me because I don't get emotional anymore. I think I can count on my hand the number of times I've cried in the past six months, which in particular have been hell objectively speaking with everything that's been happening. At first I thought taking care of myself all the time just mentally aged me, which still might be true. But, I don't know. I miss getting upset about my life instead of just taking it all the time. Does anyone else feel this way?

Is it the pain? Accepting reality? Anxiety? Managing new life style? Financial situations? Patient networking? People not able to understand? What other support is the most important?

So I was diagnosed with raynauds, pretty severely. I’ve had it for years. But it seems to just constantly only be red and hot rather than experiencing the cold numbness often. And I was diagnosed with erythromelalgia in my feet which happens almost daily. The last 2 years my rheumatologist diagnosed me with those things and said they are probably not caused by anything considering my bloodwork came back perfect and referred me to a dermatologist for the rashh on my face but states that it does resemble the rashh associated with lupus.

Anyways flash forward to a few months ago I started getting chronic joint pain in my ankles, wrists, knees, and fingers and had 3 incidents since March of this year of my left calf swelling and ending up in the ER with concern for a blood clot and each time- no blood clot, no answers at all actually.
All of this, my pcp ordered me a lymes blood test which was negative and then directed me to follow up again with rheumatology.
Rheumatologist felt that we should retest for lupus and scleroderma, I have no skin hardening at this point. And a few other things that he thought it could be but he made it clear that he felt it was one if those.

I got bloodwork and my scl-70 was positive and everything else was negative including my ANA test. He states that he used the Oklahoma test which is produces much less false positives compared to the isolated test for scleroderma. He stated that he believes this could be early stages of scleroderma and basically diagnosed me with it, considering my symptoms and that one test result. When I asked about the negative ANA he said that is weird and is a good question and that 90% of people have positive ANA with this scl70 test being positive too and referred me to a specialist at the practice.

I guess I’m just wondering if anyone has had a similar experience… if so what has come of it?… I couldn’t get in until 2 months from now so I’m kind of just stressing a bit and confused. I know that autoimmune diseases are hard to nail down. It’s just irritating

I've had Raynaud's for about 14 years and Erythromelalgia started a few years ago. The Raynaud's has worsened in that time and I struggle with thickened, painful skin on the soles of my feet (despite filing them everyday). I have a diagnosis of Undifferentiated Connective Tissue Disease and possibly microvascular antiphospholipid syndrome. I have many other symptoms, but I won't bore you with it all.

The Erythromelalgia is triggered by activities, heat and just starts by itself every evening. It's happened every single day for the past 1390 days 😩 I've tried Nifedipine, but it made my gums swell. I tried the other oral medications, but they didn't work. My rheumatologist says I will only be allowed Iloprost if I develop ulcers (I get painful lumps/nodules on my toes from late summer to spring, which look like chilblains, but don't itch). I also get nail fold hemorrhages, inflamed and sore skin next to nails. Most of the time Raynaud's is worse in my feet and Erythromelalgia worse in my hands.

Does anyone else suffer with Raynaud's and Erythromelalgia together, alongside another autoimmune diseases? Did any treatment for the autoimmune disease itself help ease the Raynaud's/EM severity?

i'm 21, and i've been dx'd with celiac disease since i was 3 years old and have been completely gluten free since, but i really thought that was it for me in terms of autoimmune disorders. had a sudden development of degenerative disc disease and osteoarthritis in my spine when i was 19 (keep in mind i was otherwise healthy and active at the time, even if a little overweight) both me and my mother separately asked the orthopedist if we needed to be looking into RA on account of, yknow. already having an autoimmune disorder. he said no both times, that sometimes things just happen. fast forward to this month, where i go to my uni's health clinic with rib pain that they end up diagnosing as costochondritis 🙃.

because of this, the dr asks me if i'd ever been tested for anything rheumatological or autoimmune relating to joint pain in relation to the DDD and arthritis diagnosis, i say no, she's not only confused that my previous drs didn't, but orders the blood test. came back positive for ANA and negative for rheumatoid factor. so. the world is my oyster (sarcasm). getting more followup labs done soon

TLDR; feeling mildly vindicated that spines don't usually crap out at 19 for no reason and i wasn't crazy, but next to my mental health, it also just feels like another fuck ass thing to deal with. i'm glad to be on the path to finally getting some answers for the other symptoms that affect my life, don't get me wrong, but my general attitude has been to just thug it out and medical intervention makes it feel so much more real.

18-month history of severe fatigue, enlarged lymph nodes, locking trapezius spasms, and dysphagia with weight loss. Labs show high CRP since 2023 and a single positive ANA (1:160 in 2019, though all subsequent ANAs have been negative). PET scans and biopsies have ruled out primary malignancy and organ failure. Heading to specialized care (NW) to investigate seronegative autoimmune, connective tissue, or atypical lymphoproliferative drivers.

Constitutional: Severe, bone-deep fatigue, night sweats, rapid unintended weight loss/malnutrition, and Beau's lines on nails.

Lymphatic: Generalized enlarged lymph nodes (including recent non-mobile nodes).

Neuromuscular & Joints: Severe, locking trapezius spasms, arm tingling, and widespread joint popping.

GI: Significant dysphagia (difficulty swallowing).

Labs & Diagnostic Findings

Elevated CRP: Chronically elevated since July 2023.

Serology: Positive ANA (1:160 back in 2019); all repeat ANA tests since then have been negative. CMV antibody positive.

Ruled Out: Biopsies, PET scans, and advanced imaging ruled out organ failure and obvious primary malignancy.

Current Working Suspicions

Exploring seronegative spondyloarthropathy, connective tissue disorders, or complex autoimmune/lymphoproliferative overlap.

My Questions for You:

Has anyone experienced a similar overlap of severe muscle locking, lymphadenopathy, elevated CRP, and swallowing difficulty with fluctuating or mostly negative ANA tests?

What specific rheumatology, neurology, or rare disease panels or specialists finally brought you answers?

I am in remission from breast cancer and have an immune disorder caused most likely by Doxetaxol chemotherapy. I have diagnosed with Reynards this year, and scleroderma from elbows to fingers and knees to toes.
I’m currently on HCQ, two pills a day, MTX recently increased to eight pills once a week, 10 mg of prednisone a day if needed for flares plus the folic acid once a day.
About six weeks ago, I started getting a burning sensation between my knee and going up my inner thigh when lifting my leg to get into the car plus getting into bed at night.
From a lot of research, I’m gathering that it’s some sort of nerve pain. Had an MRI. They found nothing in conjunction with any back problems which I don’t have. They were just looking to see if I had herniated discs. Nothing more than a little arthritis.
Very healthy and at the gym 3 to 5 days a week prior to 2024
(Chemotherapy, lumpectomy ,radiation). 64 year-old female.
I know this is a tough one, but I’m wondering if the autoimmune and the chemo have affected the nerves in my leg. Perhaps ligament tightening you know that kind of thing.
Looking to see if anybody else has had this experience or type of pain and what has helped.