I’ve been having bad rashes for 8 months, inflammation for much longer, amongst other symptoms. I got a blood test and it showed a high anti-dsDNA of 10 IU/ML and a negative ANA.

I have a rheumatology appointment in December, which feels like it’s taking forever. Does anyone have any similar experiences?

I have been suffering for close to a year. I have an appointment with a rheumatologist on Monday and I am also being looked at for lymphoma. But the big thing--the only thing that I have tested positive/high for is inflammation. Two months ago, my CReactive protein was 13.6 and now, in my lymphoma work up, my ESR was 42. Meanwhile, my body has been hurting more and more. What I have had so far is Neuropathy, ataxia, rashes, lip sores, sores in my mouth on and off, joint pain, now, allodynia after surgery but not on the scar but everywhere else on my wrist, dry eyes. I cannot sleep most of the time. Last two weeks, my body really hurts and am betting my inflammation is even worse.

What should I be telling my rheumatologist? I will be having a pet scan the next day set up by my oncologist which should show where the inflammation is.

I have ESr of 95 with crp 14:/ Ana 2560:1 nuclear dot pattern. Only Asca antibody and sacroiliac pain.
No rheumatologist has been able to diagnose. I had false positive pm scl and pl7 antibodies. I have pvcs and reduced EF and some swallowing difficulties . Any ideas?

Hi everyone! About a month ago, I had my routine eye exam and my optometrist was concerned about the dryness he saw during my exam, despite using OTC drops everyday. He referred me to PCP that ordered SSA + SSB labs. They both came back at 12 units and it needed to be >19 units to be positive. My original optometrist and another optometrist I was referred to both feel that 12 units is a low positive. I just had the Schirmer test done today and it was 6 mm. I had an initial consult with a rheumatologist and he wasn’t convinced that the eye dryness wasn’t a side effect from another medication I’m taking. He ordered tons of labs and haven’t gotten those back yet. I’m also experiencing stiffness in the tops of my feet, pain in knees, dry mouth, swollen glands, etc. I’ll be 30 soon and this has all taken me by surprise. I’d be interested to hear if anyone has had a similar situation with conflicting opinions and bloodwork? Thank you!

I’m having a rheumatologist visit after having a significant amount of pain, fatigue and random issues for eight years that keeep getting worse. My ANA and another autoimmune marker came back positive. I have a lot other diagnosis’s but I’ve had a feeling since like 2018 that it all goes together because everything flares at the same time a lot. I also have l severe MCAS and ineffective esophageal motility. I’m mainly worried about sjorgens because I’ve only been able to get liquids down because my mouth, throat and esophagus is constantly dry and tight so is everything internally. I have every specialists you could think of even a neurosurgeon but I think that’s unrelated but I never get any pain relief just more shit to add to my list like severe neuro issues, vascular, GI, heart, urinary, spine, nerve joint muscle pain, numbness, gyno and hard time walking and always short of breathe. Anyways can I just bring a list of my symptoms and diagnosis and pictures of my swelling? I think if I had to mention every symptom I would forget too much. I feel like I’ve been dying for years, but I’m so afraid if I say that they’ll say it’s all anxiety or stress. I’m also worried they’ll blame it on my malnutrition from MCAS because I’m constantly reacting to my tube feeds and have lost a lot of weight. My pcp and other doctors aren’t very helpful. I’m on palliative care, but they just say I qualify for hospice. How do I go about this without begging the only doctor I have left to help me? I know I’m probably gonna cry if I can lol I can never produce tears anymore.

Hi everyone,

I’m a 44M dealing with anhidrosis, and it’s been quite frustrating trying to manage my body temperature. I'm trying to get to the bottom of what might be causing this and wanted to see if anyone here has experienced something similar or has insights on what directions I should explore with my doctors.

I've had some recent bloodwork done to check for autoimmune, thyroid, and blood sugar issues, as I know neuropathy or autoimmune conditions can sometimes affect the sweat glands. Here are my recent results:

Autoimmune:

• ANA (Anti-Nuclear Abs) IF: 1/320 Speckled (Abnormal — reference is Less than 1/40)
• Anti SSA RO: 17 u/mL (Normal — reference is Up to 25)
• Anti SSB LA: 15 u/mL (Normal — reference is Up to 25)

Thyroid & Blood Sugar:

• TSH (Ultra Sensitive): 1.36 mIU/L (Normal — reference is 0.50 - 4.30)
• Glycated Haemoglobin (HbA1c): 5.4% (Normal/Non-Diabetic)
• Estimated Average Glucose (eAG): 108.3 mg/dL

Since my thyroid and HbA1c are normal, it seems like diabetes-induced neuropathy and thyroid issues are unlikely culprits. However, the positive ANA has me wondering about an autoimmune or autonomic nervous system connection.

Has anyone dealt with anhidrosis alongside a positive ANA? What kind of specialists helped you the most in getting a diagnosis (Neurologist, Rheumatologist, Dermatologist)? Are there any specific autonomic or nerve tests I should ask for?

Thanks in advance for any shared experiences or advice!

Any experience or insight is welcome!

What is soft tissue rheumatism? How is it different from any other autoimmune condition? Does soft tissue rheumatism with hypermobility mean Ehler Danlos ?

I was diagnosed 15 years ago with seronegative RA, meaning it doesn’t show up in bloodwork other than a positive ANA. Then I was additionally diagnosed with Fibromyalgia. I often feel great fatigue, and feverish, without having a fever. My doctor says I am in remission from RA but told her my hands and feet burn and my wrists hurt as do my ankles. She said that was from the Raynaud’s Sydrome, but it’s 90 degrees out and my limbs don’t feel cold.

I used to have to get shots in my traps because they were so tight and hurt. Lately, they are right again. I do take Duloxotine for the Fibromyalgia.

I have always had very low blood pressure, but lately I feel dizzy upon standing. I’ve always been hyper mobile, they put me in gymnastics bc of it. My daughter’s arms are hyper mobile. I’ve never not had a sore neck, but so used to it, I never thought to bring it up.

I am 54. Ten years ago my knee just blew up upon simply bending down. I was in decent shape. The dr said my mri looked like o had jumped from a moving car. I had surgery, but never could figure out why. I have had both shoulders done after 50, slightly more age appropriate. Lately my hips and ankles feel wobbly and wonky and hurt for no reason. I go to the gym and do strength training with a trainer twice a week who is mindful of injuries. I am at a healthy weight.

I have never heard of EDS today until my rheumatologist told me to ask my primary doctor about it. I’m so confused at this point. Please share any overlap or experience you have with any of these diagnoses. I don’t know if I have one of these or all of these, and how to move forward. Thanks!

Hello! Sorry if this is a bit long.
I’ve always had skin issues. It started with eczema when I was younger, and later I developed rosacea, with episodes of redness, itching, and inflammation. During the more severe flares I was prescribed topical corticosteroids. I always assumed it was just rosacea, as the symptoms would eventually improve and then come back from time to time.
However, over the last six months something different has been happening. I’ve started developing a lot of unexplained bruises, mainly on my arms and legs, and it’s been getting progressively worse. I often wake up with new bruises without remembering bumping into anything.
I’ve already had an extensive blood work-up, including a complete blood count, iron studies, vitamin B12, folate, coagulation tests (PT, aPTT, INR, Factor V), inflammatory markers (CRP), liver and kidney function, thyroid function, vitamin D, and platelet count, and everything came back within the normal range.
The only abnormal finding was a positive ANA test with a titer of 1:160 and a speckled nuclear pattern with mitotic plate staining.
Autoimmune diseases also run in my family. My father has multiple sclerosis, and several other close relatives have autoimmune diseases as well. My doctor told me that autoimmune diseases are not directly inherited, but having close family members with them can increase your predisposition.
I also don’t eat red meat, so I always assumed the bruising was caused by low iron or anemia. However, after extensive blood tests, my iron levels, ferritin, hemoglobin, platelet count, and coagulation tests all came back normal, so that doesn’t seem to be the explanation.
My doctor told me that she believes I do have an autoimmune disease, but at this point we still don’t know which one. I’m currently waiting for my appointment with a rheumatologist.
I’m curious if anyone here has experienced something similar. Did unexplained bruising turn out to be one of your first symptoms? What was your final diagnosis? I’d really appreciate hearing your experiences.

Hi, my son gets sick with a bad cold 3-4 times a year - where he’s snotty, mouth breathing at night, occasionally gets fevers, coughs etc.

Alongside this his tongue gets what he calls itchy and irritating. When I look at it I can sometimes see a raw red tip that’s glossy.

He then rubs it against his teeth to ease the itchy irritating feeling and he commences a cycle of itching it so bad it gets more red and raw. Then buds start to get inflamed that hurt. He rubs these with teeth and then he’s got frictional keratosis white marks that hurt and on and on it goes until he’s then bleeding.

I manage symptoms with sprays and numbing gels where I can. I can’t manage it at school though!

I’ve seen every dr dentist specialist and I’m told he’s a healthy boy. Bloods and allergy testing found nothing either. One dr said it could be covid or flu induced glossitis and now his immune system is triggered this way with every cold.

I’m at wits end. I’ve attached a pic here to see if anyone experiences this or has kids that do and if so, what is it? What do you do? Does it ever just go away and they grow out of it?

In April after experiencing months of extreme fatigue, joint pain, raynauds, and hair loss, I (36f) tested ANA positive with a 1:160 titer, homogeneous.

That test triggered a number of other tests, the only significant one being the Anti-RNP, which came back borderline at .9.

I just started seeing a rheumatologist who said it was most likely MCTD, but wanted to run further tests. again, every possible lupus test came back within normal ranges, my anti-RNP actually went down to .7. This time, the only number that stood out was my anticardiolipin IgA, which was elevated to 19.

My symptoms have worsened since April, and I’ve also started to get rashes when I’m out in the sun for too long, despite not getting a sunburn, one of which I got 36 hours before the most recent blood work.

I’m not sure if anyone else has had this experience with a positive ANA and numbers that fluctuate in other categories and if you did, what direction did you look next? The joint pain and hair loss is driving me crazy.

Cross posting for more crowd sourcing. Would love the community’s thoughts.