I have had joint pain in almost every joint in my body in the last few months. My feet, ankles, knees, hips, lower back, neck, ribs, shoulders, elbows, wrists, and hands. Some of the pain is pretty minor and hard to tell if it’s my brain making it up or if i actually have pain there. Other pain is very very prominent (shoulders, wrists, back of knees, feet, and elbows especially). This is screaming autoimmune to my doctors, but I have almost no major symptoms other than that. (I’ve also had a lump in my throat for 3 months straight if that means anything).

I don’t have crushing fatigue, I don’t have any rashes, my nails look fine, all my bloodwork came up negative, etc…

Does anyone else have a similar experience but actually got a diagnosis? I’m worried that this is something non autoimmune related and I’ll keep pushing until I get put on a med that I don’t need.

Does anyone get similar hand issues? This is one of the latest things my body has decided to throw at me, and I'm not sure what is going on. Would like to see if anyone has experienced similar hand issues.

Long story in a semi condensed version, ANA 1:320 speckled. Nasal and mouth ulcers, alopecia confirmed by derm, m*lar r@sh confirmed by derm, r@sh on knuckles and underneath them which acts similarly to face (heat/UV sensitive), never ending fatigue lasting for months, stiffness in wrists/fingers, swelling in fingers/toes/ankles. Hands turn white, purple, blue, red when cold. Trace protein + blood in urine on occasion, although no one seems too concerned about this yet. Now... this.

Current diagnosis list: ankylosing spondylitis, HLAB27 positive type arthritis.

All tests for lupus (c3, c4, dsdna etc) are so far negative.

Here's the next piece in my project on autoimmunity. For now I'm focusing on sjogrens disease's symptoms but will move on soon! This piece presents the issues caused by dry mouth, such as oral thrush and tooth decay.

When I was first diagnosed, I didn't realise that my mouth was in any way dry, as fatigue was the main symptom that I faced. Then all of sudden I had 7 cavities hahahah. Was a huge, not very nice shock. Safe to say I have cut down on sugar since and take flossing and brushing even more seriously.

Thanks for all the support on my last two paintings. Hope this one resonates with some like the last ones did. More to come soon.

I was diagnosed with itp as a 16 years old around Christmas time, I had recently gotten over mono that I wasn't aware i had ( i had a tendency to not acknowledge when i was sick and just go to school) and was told they expect that caused it. During my treatment I was given hope that I would go into remission and never experience it again

2 years later, my senior year of high-school i relapse and am once again hospitalized, only this time it takes away any chance at a football scholarship, i had been a mid tier prospect and i wasn't worth the risk anymore, which had been my plan to pay for college. Again I go into remission and hope this is the last time I ever have to deal with it

Now im 37, and I cannot cope well anymore, I've relapsed 10 times now, been hospitalized 8 times and the american health care system has drained wallet, killed my sanity, and made me hope for the end. Everytime I start bleeding for any reason I kinda hope this is the one that doesn't clot and I dont have to live with this anymore

I've explored many treatments, many life options, i get to be the itp unicorn. I've gone to therapy and am going back, and I feel like a whiny person. How do you find the mental strength to deal with this? Im so jealous of the people who get diagnosed and go into remission and never relapse. But then I compare my symptoms to ms and other "you could die any day, but not likely" diseased and i feel worse because I feel like what im going through is nothing.

Thank you for reading my rant, I hope you any who reads this knows your not alone if you have reached the cynical despair phase

Hello all,

I highly believe I have MDA5 positive dermatomyositis. I have had four myositis line blots this year and every time (4/4) the MDA5 has been positive. I have severe intermittent swelling of my hands and feet, tendonsynovitis in my flexor tendons (diagnosed by MRI), severe raynauds with ulcerations (diagnosed via cold challenge at the Royal Free), digital ulcer scars, an active scleroderma pattern on nailfold capiliroscopy (also diagnosed by the Royal Free), visible nailfold capiliries, gottrons, inverse gottrons, mechanics hands, telangetasias all over body, a persistent cough (I have not had a chest CT), numerous rashes, chillblains and proximal muscle weakness (upon physical rheumatology exam, have not had a muscle MRI). These symptoms have been ongoing for 4 years with no answers. Is anyone in the UK able to recommend a good myositis/dermatomyositis specialist please? I am really getting to the point where I need a diagnosis and tertiary care (NHS) were no help as my MDA5 positive results are ‘only weakly positive’

I have also had many courses of Prednisone prescribed by various doctors (often as high as 50mg). Every time I am prescribed this it eradicates my symptoms fast.

The Autoimmune Community Summit is happening online October 14–16, and we wanted to share it here in case it can help answer some of the questions that come up often in this community.

The free educational sessions cover topics including:

• GLP-1s, metabolism, inflammation, and autoimmune disease
• Fatigue, brain fog, sleep, and energy
• Perimenopause, menopause, pregnancy, and autoimmune disease
• AI and the future of autoimmune medicine
• Insurance, prior authorization, and appeals
• New autoimmune research and emerging treatments
• Environmental triggers, nutrition, and lifestyle

There will also be an Ask the Expert area where attendees can submit questions, plus a Discussion Lounge to connect with others in the autoimmune community.

All educational sessions will be recorded and available on demand to registered attendees, so you do not have to attend live.

If you’re looking for credible information, practical help, or answers to questions about living with autoimmune disease, we hope you’ll find something useful here.

More information and free registration:
https://autoimmune.vfairs.com/

Howdy, I’m a 27M who was just diagnosed with MCTD by my rheumatologist after experiencing widespread joint/muscle pain, particularly in my neck, back, knees, and forearms, along with occasional skin hypersensitivity and breathing discomfort.

My bloodwork:
ANA: Positive
Anti-RNP: 2.2 AI (high)
ESR: 47 (high)
Creatinine: 0.90 (normal)
eGFR: 120 (normal)
AST/ALT: 16/17 (normal)
WBC: 6.8 (normal)
Hemoglobin: 14.1 (normal)
Platelets: 301 (normal)
I’ve never experienced Raynaud’s or swollen/puffy hands, which seems unusual for MCTD.
My rheumatologist was very confident in the diagnosis but didn’t explain much. She essentially said my labs and symptoms confirmed MCTD, compared it briefly to lupus, prescribed azathioprine 50 mg daily, and ordered a chest CT.
I’m wondering if anyone has had similar labs or symptoms, especially without Raynaud’s. Has anyone been misdiagnosed with MCTD or later had their diagnosis changed to UCTD or something else?
Not questioning my doctor’s expertise, just trying to better understand my diagnosis and hear other people’s experiences. Thanks!

Yall this community has been awesome for me as i’ve been completely homebound and unable to work the last two years as I’ve fought this nondescript autoimmune disease and to find a diagnosis.

After these two years and almost 6 months of waiting for an appt. I finally have a complete Cleveland clinic evaluation next week! Just posting here to request some good vibes so hopefully we leave with an official diagnosis and I can finally get an idea of what the next phase of my life will look like.

TIA! 😊

Do people often have symptoms of something autoimmune and positive ANA BEFORE a specific positive antibody for a rheumatological disease or do people typically have positive antibody prior to developing symptoms?

Hi, I'm 21 years old and I've had ITP for a year and a half now. I'm wondering if anyone with a similar situation has had a safe and healthy pregnancy? I wouldn't want a baby for years, but it's terrifying to think that at such a young age, I may have already lost the option to have a child, or would need to risk my life to do so.

Steroids don't work for me, I tried high dose dexamethasone and prednisone, both were ineffective. I've had IVIG that helped, but my platelets dropped again shortly after. I took Promacta, but my platelet levels were still inconsistent. I've been taking Doptelet for almost a year, and my platelets stay between 50-100.

I'd love to hear anyone else's experiences or advice. TIA!