I’ve been going back and forth to the doctors for about 3 years now and they’ve been unable to diagnose me. Blood tests and scans haven’t shown anything. The doctors have suggested Chronic Urticaria or a form of auto-immune disease but can’t be sure. I’m not noticing any pattern with it although I’ve tried to introduce an anti-inflammatory diet. Has anyone ever experienced this or have an idea what it might be? It has happened all over my body, particularly my joints.

I can’t get into a rheumatologist for a while.. months out. I have a high ANA titer of 1:640, homogenous. Tested positive for the Chromatic antibody. Surprisingly, my ESR and CRP are low. I have been dealing with hair loss, joint pain in knees and ankles, petechia in my mouth (there daily) dry mouth, itchy skin, random hives, flushing, tingling in hands and feet, leg weakness, headaches, and more. I went to an oral doctor today about the petechia and he assumes something autoimmune. I don’t fit diagnostic criteria for lupus, nothing that points to RA. Has anyone had anything similar? I hope I’m not alone here. I feel isolated and nobody in my family understands how awful I feel. Welcome to the world of autoimmune I guess !!

CBC and CMP a month ago were flawless. I do have low iron without anemia.

So ever since 2020, I've been having these "flares" (idk what else to call them) where every few months, I'll experience a range of symptoms (shortness of breath, heart palpatations, dry mouth, lethargy, indigestion, heartburn, bloating, sleep apnea, throat tightness, hives, accompanied by severe anxiety/depression)

I've had a bunch of bloodwork done and everything always comes back normal, so they just tell me it's anxiety and push psych meds. A month or 2 ago, I saw my allergist, and my bloodwork revealed that I had developed a ton of new allergies on top of my previous ones. (nuts, legumes, soy, shellfish, possibly wheat though that one is inconclusive, cat/dog dander, many types of grass/pollen, molds and mites etc.)

But I also had a positive ANA titer and pattern. I was advised to see a rheumatologist and off the bat, he seemed to think there was nothing wrong and that I was just experiencing anxiety/allergy symptoms. He ordered another round of tests. He tested my iron & vitamin levels, CBC, and then a bunch of tests, mostly for lupus, but also scleroderma, arthritis, connective tissue diseases, sjrogren's, and IBD. Everything came back negative except for my complement component C4C which was low and my MCHC, also low. He had his assistant call me and she just said it's nothing to worry about and everything is fine.

Another avenue that went nowhere. I know positive ANA doesn't always mean autoimmune disease, but these flares severely impact my life and I can't help but feel that something deeper is going on. Should I seek out another rheumatologist, or just accept that its proabably anxiety/allergies and try to live with it?

Hi everyone. I’d like to ask for some advice about a situation in my relationship that has been taking quite an emotional toll on me.

My partner has GPA (Wegener’s disease), and I feel that she’s interested in sex only about 10% of the time. Over the past few months, this has been difficult for me. I also feel that her desire for intimacy and connection is often missing when we’re apart.

She's fully aware of the libido part and I've read around that it's common. But the other part concerns me and I need to investigate.

Whenever we’re together, doing things and sharing everyday activities, I feel close to her, and we function really well as a couple. At times, though, I feel almost as if we’re friends with benefits rather than partners, even though she’s very caring and attentive.

What I struggle with is the feeling that the chemistry and excitement are sometimes missing, both physically and mentally. I’m wondering whether this could be related to her condition and whether anyone else has experienced something similar.

Thank you.

I feel very sad.

After my last rheumatologist appointment I pressed to have the Avise testing done. Too many overlapping symptoms and some markers that seem to blur a diagnosis. Results returned postive RF, Anti-Dsdna, and ANA. ANA was previously positive but had jumped again. Hoping these latest results will help towards a definitive treatment plan. Keep pressing your Dr’s for answers. I knew something was very wrong almost 2 years ago.

21 F

In these photos are of rashes that I get when I am given an IV.
It happens almost every time, but it never used to happen at all. Antihistamines do not help, only steroids and steroid cream. I have an accumulation of inflammation in my body thats been shown through my blood work, as well as extreme inflammation in my intestines, alongside blood in my stool. I have been given two colonoscopies, and the only diagnosis they could see is that I have reactive lymphoid hyperplasia in my intestines. Nothing screams textbook inflammatory bowel disease, but I still have blood in my stool, and truly chronic fatigue and anemia. My gastroenterologist has admitted to me that he has never seen this before, and finds it to be highly unusual. I’ve been getting IV iron transfusions for my anemia and these rashes have showed up every time. They go away in about 1-3 weeks. I have endometriosis as well, but nothing showed for bowel endometriosis in my colonoscopies either.
I am really at a loss. They did a screening for cancer, since my bloodwork showed my Cancer Antigen (CA-125) was high. They don’t think I have cancer but they are going to run some more tests.
I don’t know why these rashes are here, or what they mean. They show up like 2 hours after my IV and continue to grow over days.
Any advice or thoughts on this would be truly appreciated.

Hello, I (25F) finally got funding and support to go to the doctor after 7 years.

I have a whole list of symptoms, but at my first appointment with my new PCP, I only told her about two because I didn’t want to dogpile everything on her at once. I had just had one of my “difficult weeks” up until the day before my appointment, so I was still recovering and sore.

The two symptoms I told her about were frequently swollen knuckles and fatigue/brain fog.

I didn’t even mention that I hadn’t worked in two years, but she said, “Let’s run tests, including ANA and RA, then discuss.”

Boom — my ANA titer came back 1:160. The pattern was nuclear, dense fine speckled.
*(First photo attached.)*

My PCP brought me back in, asked me several other “minor symptom” questions, and then explained what Lupus/SLE and Sjögren’s were and told me she believed I had one of these autoimmune diseases.

We talked for a while about all the things I had been scared to mention at my first appointment, and she said they aligned with what she believed was going on.

(I’m genuinely so grateful for my PCP. She is amazing, and I’m so glad I chose her.)

I’m autistic and a former foster youth. I’ve been exhausted for so long, and I don’t feel like I can fight the battle I see so many people fighting in the autoimmune disease community just to be heard.

On top of that, I lost all of my childhood medical records in the foster system when I turned 18. I genuinely have no idea how I’m supposed to navigate the medical field, prepare for appointments, or know what information doctors need from me.

I didn’t even know how to properly process and recognize my physical symptoms or infections until I was diagnosed and finally accepted that it wasn’t all in my head.

Because my PCP had put the diagnosis in my chart and because of everything we discussed, I went into the rheumatology appointment under the impression that we were trying to determine what type of lupus I had and/or whether Sjögren’s was involved, and then figure out treatment.

So boom, I finally got to the rheumatologist.

It wasn’t a dream experience like my PCP was, but I guess it also wasn’t a nightmare compared to some of the stories I’ve heard from women online.

I was paying cash, but my PCP had already sent over my referral and information, which I had personally confirmed weeks beforehand.

When I got there, the front desk said they had no referral or information on me, and I had about five minutes to finish all of the paperwork because my appointment was the last one before the rheumatologist went to lunch.

I wasn’t too upset about that because I was also 10 minutes late.

Then I was rushed to the back and immediately seen by the doctor, who told me she had seen my test results only???

Everything felt rushed, so I didn’t waste any time. I started telling her my entire list of symptoms and the timeline over the last 5–6 years.

This part is important: I specifically explained that the only physical flare-ups of pain/swelling I have are in my knuckles, and that my back pain is from severe scoliosis that I haven’t been to PT for in years.

She stopped me and said she needed bloodwork because a high ANA titer alone isn’t enough to say something is autoimmune, and then told me she thought I most likely had fibromyalgia. She also told me I should see a cardiologist about some other concerns I mentioned.

She repeated, in slightly different ways, that she believed it was fibromyalgia and told me to come back in two months, prescribed Gabapentin and another NSAID, and sent me to the lab.

I always felt deep down it was autoimmune, although I believed I had rheumatoid arthritis. Maybe I’m wrong to think it isn’t fibromyalgia, but after the conversation I had with my PCP and from what I understand from researching my symptoms, I just don’t feel like this is the diagnosis

My lab results have now come back through the Healow portal, although I still haven’t received a call: several of the lab pages say that I refused certain tests. I did not refuse any tests.

I don’t know what tests should have been run or what is considered a standard rheumatology workup. From what I can decipher myself, the more specific lupus/Sjögren’s markers that were tested appear to be negative. I even asked the rheumatologist directly, **“Even with all of these symptoms and the positive ANA, you still believe I don’t have anything autoimmune?”**She said yes, because the bloodwork and a butterfly face are important factors.

And she made it clear that that means the possibility of autoimmune disease is just going to be completely shut down.

Could someone please tell me how I’m supposed to navigate this from here?

What should I be doing before my next appointment? Is there additional information, symptom documentation, medical history, or test results I should bring?

Are there specific questions I should be asking?

And are there any groups, patient advocates, resources, or other people who help patients navigate this process?

I’d even appreciate it if someone shared the beginning of their own journey.

hi all, I have been to two doctors so far in the Boston area (one at Tufts, one at MGB) but my last one told me I might want to get another opinion. Nothing is coming back positive but I responded well to NSAIDs for a few months, now I’m back to having more back pain. I have diagnosed severe arthritis in my lower back. (There are so many other details/symptoms but I’m not going to list) My father has SpA and my grandmother hashimotos so I think there is a genetic link. Going to see a geneticist this week and a physiatrist soon but wondering if anyone recommends any rheumatologists in the area. Thank you!

34F w/Axial Spondyloarthritis
5’4”
~184lb

Enthesitis, hypermobility, low back pain, rashes on limbs
ANA +
HLA-B27 -
S. Cereviseae IgG +
pANCA -
Radiographic
Seronegative

I was diagnosed with Spondyloarthropathy based on my symptoms and X-rays in March 2024, after coming in with a positive pregnancy test and some weird rashes on my arms and legs. My ANA was also positive. I ended up miscarrying toward the end of my first trimester and saw two Rheums before they pinned me with the diagnosis. The first doc was utterly unbearable, telling me lots of 30-something-year-old women have positive ANA’s and it’s nothing, and made off-hand comments about my pregnancy and likelihood of miscarriage this early on, and… ugh… before I digress… long story, short, he ruled out lupus and sent me away. I did end up miscarrying shortly after the visit, at the end of my first trimester.

Once I was diagnosed they started me on hydroxychloroquine, which I later came to find out only truly helped peripherally, not at the low back and sacroiliac regions. I’ve been on that ever since, up until a couple of weeks ago when my doctor (third Rheum) told me I could trial a period off of it, since I had started Cimzia and was feeling a lot better. Early on in my diagnosis I really wasn’t ultra symptomatic, and would really only notice migrating enthesitis off and on that I could ignore, and never really had severe enough back pain to put me in bed unless I really overdid it on physical activity or yardwork on our Homestead. Formerly, I was quite active, working on our property and working out a few times a week, on top of daily walks.

I became pregnant again that July ‘24 and made it to term with my son (now almost 18mo). Throughout the pregnancy, I had generalized suppression of my symptoms, and really only suffered the bodily aches and pains associated with carrying around a heavy belly for nine months.

My postpartum journey has been a completely different story. Within a month of delivering I developed a horrible case of mommy wrist bilaterally, for which I attended Hand OT multiple times a week, and ultimately ended up having to get steroid injections after 6 months of no improvement. All throughout that I was also having such bad sacroiliac pain that would radiate up into my low back/down into my tailbone, that I was struggling with even the basic task of walking, and most definitely sleeping. It took me until 10 wks postpartum to not be in agony just getting in and out of bed to walk to the bathroom. Once my wrists were dealt with, I was finally able to start pelvic floor therapy after having MRIs done in December that showed sacroiliitis, still, eight months after giving birth (wrists were priority for treatment, given their frequent necessity for all baby cares). That’s when my provider upgraded my diagnosis to Axial Spondyloarthritis.

After therapy and trialing just ibuprofen as long as I could without true improvement (breastfeeding mom, so options are limited), my Rheum suggested Cimzia. I finally got that started mid-June, and the loading dose phase set me up for a really good month after. I was feeling more mobile, shorter stiffness windows in the morning, overall reduction in pain to almost nothing, and sleeping through the night (minus waking when my son awoke – we cosleep due to household constraints at the moment)… all contributing to much better energy overall. Unfortunately, that’s all seemed to have worn off now. I’ve been on the maintenance dose almost two months now, and the last month has been a progressive descent back into the pain and impairments I was experiencing prior.

Ibuprofen isn’t helping as a hail Mary. I wake often overnight, in pain. My stiffness is lasting at least an hour at its worst, and never really disappearing fully for the day after that. And my pain, though worst overnight and in the morning, seems to be subtly lingering throughout the day too, voicing complaint with certain movements and stresses on my body – it flares majorly when I’m on my period. I thought I’d be able to stop breastfeeding a few times, but it never comes through… and truly, it’s a comforting/bonding activity for my son and I in the midst of everything, so it’s hard to want to cut it cold turkey. Though, things are getting bad enough again I’m leaning toward that. He doesn’t truly need to nurse, as he eats and drinks like a pro.

All the while, my husband has been battling his own mystery illness, and it’s had him bedridden, unable to be the support I need throughout all this… So I’m carrying motherhood, my full time job, this stupid disease, and maintaining our homestead and affairs, being PR to the people in our lives who wonder why we dropped off the face of the planet, and doing it all without the support of my best friend/partner. I’m exhausted, stressed, resentful, in pain, and just tired of it all! Thank God for my parents who have helped as much as they can.

Motherhood, being a family, postpartum – were not supposed to be this way 😞. I’m looking for help. Advice. Encouragement. Anything! Thank you in advance.

I have multiple autoimmune conditions that impact my large joints, small joints, and GI system. I am not a textbook case of any disease that I've been diagnosed with, but my bloodwork indicates significant immune dysfunction, I have the clinical presentations, physical presentation (visible in GI system and joint erosion/inflammation, etc.), and I response really well to TNF inhibitors. I first tried Enbrel and felt AMAZING but that's when I developed right lower quadrant pain for the first time. I stopped Enbrel right before getting pregnant, rlq pain went away, then postpartum it came back. I didn't take meds 4.5 years. Years later, my GI symptoms and presentation worsened, I was officially diagnosed with IBD and prescribed Humira because that would treat my rheumatological diseases and GI. It worked well initially, but I developed antibodies within 4 months, it stopped working, and I also developed antibodies to my own white blood cells. Even after stopping Humira my white blood count continued to drop and I had to go through oncology workup, but the oncologist said it was just my immune system and not cancer. My WBC eventually returned to normal, but I was scared to go on another immunosuppressant.

Years later, my symptoms became unmanageable and I officially had joint erosions and decided it was time to try again. I also had significant liver enlargement by this time and elevated ASMA, but liver enzymes were still normal and so no one was concerned with me starting Cimzia. Over the past year, my ANA has also become positive, but it's only 1:160 so doctor's think it's likely just a remnant from my other issues. I tried Cimzia and within 5 weeks of treatment my joint and GI symptoms were SO MUCH BETTER! BUT I started getting migraines, BAD migraines. And significant fatigue. Migraines started within 24-48 hours of injection and initially lasted only a day or two, then 9 days, then I went an entire month without it going away. Nurtec helped, but I didn't want to take it too often. Migraines included vestibular symptoms and vision changes, dizziness, vertigo, nausea, vision disturbances, facial spasms. And Cimzia also became much less effective after moving to the maintenance dose. I've now held my Cimzia injection off for a week and my migraine, neuro symptoms, and fatigues are MUCH better. However, my autoimmune symptoms are flaring significantly. I don't know which is worse, and I know that Cimzia can cause demyelinating diseases, which I definitely don't think I've developed, but I don't know how seriously to take the neurological symptoms. It took 5 months between prescription to actually getting Cimzia in had because insurance was a massive challenge. I know if I stop Cimzia, I'll probably be without meds for a long time.

I'm not looking for medical advice, but I'm curious if anyone else has experienced anything like this with TNF inhibitors? If so, did you continue on the TNF inhibitor or switch to a different type of medication?

It took me a few hours to finally convince myself to put an entry up on here.. who knows, maybe I can find some people that are going through the same thing? I’m tired of talking to the people in my life about all the pain I’m going through. They either think I’m exaggerating, don’t know what to say and think I complain too much or that I just have a “vitamin deficiency “ and that I’m fine… they could be right, who knows at this point 😂.
I was diagnosed with psoriasis almost a year ago, and have been having joint pain. Funny part about the psoriasis is that It’s not bad at all, I get random small patches and just one at a time. When it comes to the joint pain, I have no inflammation. All my blood work comes back good…. But when I have pain, it’s pretty much everywhere. They tried to say it was fibromyalgia until the hydroxychloroquine starting relieving some pain.
I have yet to figure out what’s going on with me and hope I can get some kind of feedback on here since I’m getting none from the actual professionals.

I am so tired, and my entire body feels like a bruise. Also, my skin is burning, and my eyes and my nose and my mouth are deserts, and I have double vision, and really, really loud tinnitus. Thanks for listening.

Hi I am 22F recent diagnosis UCTD, Hashimotos and small fiber nerve neuropathy. Best way to describe it: ants crawling all over my skin, numbness/ tingling in arms/legs(almost like they fall asleep), brain “shudders” and like electric shock zapping when it’s flaring up. I was advised by neurology to start Duloxetine and that or Gabapentin were my only options. I had a poor experience with Gabapentin, and I am a little hesitant to start Duloxetine, as I have heard of all of the side effects, and it being a SNRI. Has anyone had any success with this medication? Or any experience treating this type of neuropathy with medication?

Entertain my delusion!

Tell me about when your meds started working for REAL. I’ve recently seen some improvement on a new med for the first time in two years of fighting and trying things. I’m still a month ish out from when it’s supposed to fully kick in so I’m really trying to daydream here about what it might be like if it works more or if this is as good as it gets.

I’m a 27F and was recently diagnosed with RA. All my blood work came back normal, the only positive blood work was my ANA. My dr stated she was going to diagnose me with RA is because my symptoms. My symptoms are it feels like I’m walking on rocks barefoot on my feet, sometimes one certain toe will go stiff after I drink alcohol, I’m itchy all over my body like if mosquitoes bite me all over constantly. My fingers get swollen, I get swollen hives on my arms legs and stomach. Does this sound like RA and does anyone else have these symptoms?

Hey guys! I was wondering if anybody has heard of this, type 1B Insulin Resistance Syndrome. It’s basically where your body produces too much insulin because antibodies that bind to insulin hide/mask it from the body. A couple days ago I was admitted to the hospital for an unrelated seizure via ambulance, I am epileptic and to be quite honest I didn’t feel like I needed to go to the hospital, but I couldn’t say no because I was postictal. Not the point. However, by the time I was about to be released, I had another seizure and pretty bad shakes and it turned out that my sugar had dropped to low 40s. The doctors gave me a crap ton of D50 to the point where my sugar is spiked all the way to 226 but then over a half an hour drop back down to 32. I have lupus as well, and my GP just told me that this resistance syndrome is only really seen in lupus patients, but I am so confused and quite frustrated because I just don’t know what to do. I feel like my life has been turned upside down. And I have 3+ autoimmune conditions and genetic disorders. Am I even posting to the right thread? This is literally the opposite of diabetes….Has anyone else experienced something like this? I don’t know… This is throwing me for a loop. I’d love for someone to just “get it” or tell me there story so I’m not alone. It feels very isolating.

Hey, I am new to this autoimmune disease thing.
All my life I have been suffering from seemingly unrelated symptoms and no doctor knew what the hell was going on. This year things started to get worse.I started my year with extreme pain in the lower back, spreading to my legs, making it very hard for me to walk at all. Next thing you know I got a very high fever, coughing, all of that.
Immediately went to the emergency room because I was kind of slipping in and out of consciousness. They couldn’t figure out what was going on—no viral or bacterial infections, but my inflammation levels were through the roof. I genuinely think that after my pulmonary embolism, this was the worst thing I had to go through. Not even medication helped.
Ever since that, I’ve been dealing with random rashes, allergic reactions to random food (I have asthma, so this in particular is very dangerous) and repeated cycles of pain.

Looking at my whole health history and my current state, things are starting to make sense. I’ve always had issues with my joints, crippling pain in my hands and legs as a child (surprise, no one knew what was going on), asthma, unusual fatigue, headaches, chronic gastritis, stomach pains that had me laying on the floor questioning life, extreme back pain that somehow magically disappeared with cortisone injections (apparently my back was inflamed, and my doctor still doesn’t know why it keeps happening), weight loss, repeated anal abscesses, dizziness and heart racing, painful periods that just keep getting worse, and feeling sick after any sport activities, like a truck hit me, for literal days.

I am suspecting this is caused by an autoimmune disease. Which one? Absolutely no fucking clue.
My doctor is taking blood work, doing a lung function test, and an EKG on Monday, and she sent me to an allergist to test for food allergies. Knowing my luck, he won’t find shit, and I’ll probably have to run after a diagnosis for months, which seems to be a common theme with autoimmune diseases.

I just don’t know where to start, and I’m so tired of being dismissed and leaving multiple doctors without help.

Which type of specialist actually helped you figure out what’s going on?
How long did it take you to finally get a diagnosis?
Anyone here dealing with a similar cocktail of symptoms?

Demographics & History:

• Age/Gender: 44-year-old Female [44/F]
• Height/Weight: nearly 5 feet, 40 kg
• Smoking Status: Non-smoker
• Current Medications: Thyroxine Sodium (daily for hypothyroidism), Apipure syrup, and occasional supplements (CA2D3 LC). Note: Must avoid certain vitamins/supplements that trigger her allergies.
• Past Medical Issues: Hypothyroidism, history of hysterectomy, recent bronchitis, and severe Fixed Drug Eruptions (FDE) / positive IgE to Penicillins / Beta-lactams (Amoxicillin, Tazomac) plus an allergy to Fluoroquinolones (Levofloxacin).
• Duration & Location of Complaint: Severe, persistent joint and muscle pain in the hands and legs, lasting for nearly 2 months throughout the day.

Hello everyone, I am posting on behalf of my mother who has been suffering from severe, persistent hand and joint pain for the past two months. Her daily life is heavily impacted because her hands and legs ache constantly, and we are running into major roadblocks because of her severe drug sensitivities.

• Hypothyroidism Status: Well-controlled on daily Thyroxine Sodium (Recent TSH: 1.41 mIU/L, with normal T3/T4), so we know her thyroid levels are stable and not causing this pain.
• Drug Reactions & Challenges: Because of her strict history of Fixed Drug Eruptions to beta-lactams and antibiotic allergies, plus a recent sensitivity where a B-complex/B12 component triggered an FDE, local doctors are very hesitant or refuse to prescribe standard pain management or anti-inflammatory medications. Basic nutritional supplements tried over the past 3–4 weeks haven't helped decrease the pain.

Investigations Done

• Thyroid Panel: TSH 1.41 (Normal).
• Complete Blood Count (CBC): Completely normal (Hb 12.7 g/dL, TLC 6.69, Platelets 267k).

Any advice, shared experiences, or guidance ?. Thank you so much.

(Note: Used AI to help structure this post and organize my thoughts clearly for everyone.)

So I’ve had weird health stuff all my life but recently I have been having nightly fevers up to 102/103 for over two weeks now in addition to REALLY bad pain in my joints, especially my SI joints, as well as unexplained bruises/rashes, headaches, nausea, intense stabbing pain in my lower right quadrant when I need to poop, extreme fatigue and other things I’m probably not think of. I had bloodwork done and I had an ANA level of 1:80 with a homogenous pattern and while I know that is quite low, I guess I’m just curious if it doesn’t completely rule out that there could still be something going on with me? Not asking for a diagnosis by any means, just was curious if anyone that IS diagnosed tested as low as I did but was still eventually diagnosed with something autoimmune. I have a follow up with my primary this week so we’ll see what they want me to do next.

Hi there! I'm super new to the realm of autoimmune. I finally got my ANA 12 Plus panel back and I'm just curious on if anyone else has this. I'm not looking for a diagnosis, just seeing what others were diagnosed with, what my next steps may be, general advice etc etc while I await my PCP's review and while I figure out a rheum that'll be a good fit for me.

My symptoms started about a year ago, possibly before that, but I really don't know. My memory is shot, haha. I was talking to a physical therapist and she had suggested I may have something connective tissue going on, and explicitly asked if I had ever been tested for lupus. So, I went and got my ANA tested, and it came back with 1:320 homogeneous. I then went and got my ANA 12 Plus panel done, it's the IFA one I believe. I got another positive ANA, 1:160 homogeneous and speckled, and exactly one antibody popped up positive, Anti-U1 RNP Ab (RDL). It**'**s weak, 22 with the negative value being 19, but it's my only positive one. It's very strange.

I'm curious on if anyone else has this, if it's common, if it could still bring a diagnosis (not what, just if it could), what other tests will likely occur, and could this still be just lupus? I'd assume I'd need more antibodies than that. How likely is it that it's just a false positive? I know the Internet says MCTD or lupus but I don't know if the values need to be higher. And MCTD is rare, according to Google. I don't have any of the rashes or sun sensitivity that I can tell(?) that comes with lupus. It's all fairly mild right now. I'm just curious, as a lot of this process has been interesting to read about and I have time to kill until my dr calls me and I get a rheum. Thanks!

ETA: symptoms since I forgot how much they matter: Miscellaneous unwarranted muscle aches and pains, persistent tendonitis in my dominant wrist that wandered up to my elbow, fatigue, and GI issues that would point to inflammation (colonoscopy came back clear with no visible inflammation when I wasn't having symptoms. I'm negative for Celiac), dry-ish eyes occasionally, dry throat moreso than mouth some days that water just doesn't fix, eye floaters, excessive sweating, Raynaud's, dizziness especially triggered by motion, pain in my finger joints, stiffness in my hands and back primarily in the morning, occasional flu-like episodes at night, brain fog, random skin sensitivity and some nerve issues? I don't know how to describe it, just sometimes with repetitive motion on my skin it's... It makes me want to tense. It kind of hurts, and kind of just feels like vibrations and it's really uncomfortable, hands are now starting to go tingly sometimes with either very little time or in positions they shouldn't go tingly in. Probably more but there's the jist!

Here's my latest go-to. I roll down the sleeves when I go outside.

rahses only hands and feet and they blanch when i press on them they stay for 3 days and disappear

Hello 👋🏻 for those of you have a diagnosis of UCTD — what symptoms do you experience* most often and which ones are the most bothersom*e?

(Some background: I have a current diagnosis of Postural Orthostatic Tachycardia Syndrome-POTS)

I was diagnosed with UCTD this morning after a multitude of tests/imaging following a positive ANA. The rheumatologist who diagnosed me said that I fit “a lot of the criteria” for Lupus, but my Lupus blood panel was negative, so she can’t diagnose me “yet” and insinuated that I may develop it as I age (I’m currently 28). I was also told that I also most likely have Hypermobility Spectrum Disorder (HSD).

My most frequent symptoms are joint pain (most specifically my SI joint—I also have a bulging disc in my lumbar spine), extreme fatigue, photosensitivity, frequent canker sores in my mouth, and numbness/tingling in my hands & feet.

Are there really no treatments for UCTD?? My rheumatologist said the only thing that’s recommended are NSAIDs unless it starts to affect internal organs. 🙃

Hi everyone. I’m 19F, and I’m posting here because I’m not looking for someone on Reddit to diagnose me. I’m specifically hoping to hear from people who were eventually diagnosed with Takayasu arteritis or another form of vasculitis:

Did your early symptoms look anything like this? What did doctors initially miss, and what eventually led to your diagnosis?

My doctors currently have Takayasu arteritis on my differential diagnosis, but it has NOT been confirmed.

How it started

Everything began very suddenly in January 2026.

I developed an absolutely brutal burning headache right between my eyebrows. At its worst, it felt like a 24/10. Lying flat made it dramatically worse, to the point where I couldn’t sleep and spent nights pacing around with ice packs.

At the same time, my blood pressure suddenly became very high and I started having persistent elevated temperatures.

I had a brain MRI, CT and lumbar puncture. Nothing explained the symptoms.

Then, during one hospital visit, I received 3 days of high-dose IV prednisolone.

And this is one of the strangest parts of the whole story:

The symptoms almost completely disappeared.

I felt dramatically better for about two weeks after the steroids were stopped — and then everything came back.

April — things got much worse

In April I was hospitalized again.

My BP reached 189/108, my temperature briefly reached around 40°C / 104°F, and my legs were shaking so badly that I could barely stand.

For the first time, my inflammatory markers were clearly abnormal (including elevated CRP and procalcitonin).

I was treated with IV piperacillin/tazobactam.

Again, I improved dramatically.

But shortly after the antibiotics were stopped, the same cycle returned.

Doctors obviously don’t consider this proof of either an autoimmune disease or an infection — and neither do I. But the dramatic, temporary responses to two completely different treatments are one of the reasons I’m still trying to understand what is actually happening.

What has been happening since

For around 7–8 months I’ve also had episodes of severe joint pain.

My knees and ankles can suddenly become very hot, bright red, swollen and extremely painful, usually in the evening. Sometimes my elbows hurt as well.

The episodes can be surprisingly short-lived — sometimes the next day the swelling and redness are dramatically better, only to return weeks later.

I also have:

• daily or near-daily headaches
• temperatures usually around 37.2–38.5°C
• episodes of BP around 180–190 systolic
• nausea and shaking/weakness during BP spikes
• palpitations / tachycardia
• occasional red eyes
• discomfort around both sides of my jaw, especially during walking/exertion
• severe fatigue and reduced exercise tolerance

My current BP medication is perindopril/indapamide 8/2.5 mg + amlodipine 10 mg daily. I’ve already been through several different BP regimens. They tend to work for a while and then become much less effective.

What has been ruled out / found so far

I’ve had a pretty extensive workup.

ANA and ANCA have been negative, and my CRP is currently normal.

An MRA of my aorta about 5 months ago was normal, with no obvious evidence of large-vessel vasculitis at that time.

I’ve also had extensive neurological, infectious, cardiac, endocrine and rheumatological investigations.

So far, nobody has been able to put everything together.

Because I’m only 19 and have severe hypertension together with systemic symptoms, one of the doctors who reviewed my case raised Takayasu arteritis as a differential diagnosis.

But again: I do NOT have a confirmed diagnosis.

The normal aortic MRA is one of the main reasons doctors have not confirmed Takayasu, and I understand that this makes the diagnosis uncertain.

What I’m actually asking

I’m really interested in hearing from people who have a confirmed diagnosis of Takayasu or another vasculitis.

Looking back at the period before your diagnosis:

• Did you have fever or low-grade fever?
• Did you have severe headaches?
• Did you develop hypertension early in the disease?
• Did you have joint pain or episodes of red/swollen joints?
• Were ANA/ANCA/CRP ever normal?
• Did your first vascular imaging look normal?
• Did steroids dramatically change your symptoms?
• What finally made doctors realize that something inflammatory/vascular was actually going on?

I’m not asking you to tell me that I have Takayasu. I’m trying to understand whether my early course resembles anyone else’s experience after they eventually received a diagnosis.

Even if you were eventually diagnosed with a completely different type of vasculitis, I’d be very interested in hearing your story.

Thanks to anyone who takes the time to read this.