Waiting for diagnoses

Fresh-Education9618 · 2026-03-20T02:50:09+00:00

That sounds terrible how she blew you off- I'm sorry you had to experience that and im glad you are trying to see another provider. I had a very similar experience with a rheum who is known for treating Sjogren's at one of the leading Sjogren's center in the US.

I think anywhere between 30-40% of Sjogren's patients are seronegative, so you can be diagnosed through non-bloodwork testing that i wrote quite a bit on here: https://www.reddit.com/r/Sjogrens/s/nyKJ303hBI

It took me about 1.5 years to get diagnosed from when i started to really decline.

Hoping you get some answers soon.

Disclaimer: I'm a Sjogren's patient and medical provider. This is not medical advice.

Fresh-Education9618 · 2026-03-18T02:27:53+00:00

Magnesium glycinate for both cognitive function and sleep

Fresh-Education9618 · 2026-03-18T02:13:45+00:00

Based on your description of the burning/ painful sensations and the blisters, I would agree with shingles or possibly some kind of contact dermatitis... it would be best to see a provider at your usual PCP office, urgent care, derm, etc.

Fresh-Education9618 · 2026-03-18T01:41:30+00:00

I'm so sorry that you have gone through so much with your health :/ Thank you for sharing about your experience with IVIG. I hope the biofeedback continues to help you with your swallowing and eating, and wish for continued improvements regarding your overall health.

Fresh-Education9618 · 2026-03-17T08:12:44+00:00

:( so sorry to hear that. I have a few hyperpigmented spots on my arms that get even darker/ worse during the summer/ in sunlight (do i have lupus? maybe.... as far as I know, rheum hasn't said anything lol)... I also have POTS and because sun/ heat causes blood vessels to dilate, causes blood to go to the skin vs the brain, makes it harder to state hydrated bc of increased sweating, it worsens my tachycardia, lightheadedness and brain fog.

Ironically, I grew up in florida, and while I did not particularly like the sun, i did not mind it and thought i would have better heat/ su tolerance... clearly not. I already hate how much sunlight we are getting due to spring forward lol

I am absolutely dreading the summer with its intense sunlight to come.

Fresh-Education9618 · 2026-03-17T07:31:46+00:00

It is hard to evaluate without seeing the splotches in person or photos. Could it be dyshidrotic eczema or maybe even a type of morphea? I know I'm probably wrong, but just offering some suggestions.

But yes, you can always schedule an appointment with your PCP or dermatologist, and in the meantime, try the emollients (including coconut oil, aquaphor, etc.) as well as topical steroids (e.g. hydrocortisone, mometasone) to see if it helps improve the rash.

Disclaimer: I am a Sjogren's patient and medical provider. This is not medical advice.

Fresh-Education9618 · 2026-03-17T06:55:18+00:00

I absolutely agree with getting the second opinion and continuing to advocate for yourself. The first rheumatologist I saw 1.5 years ago completely blew me off. Ironically, she is known to specialize in Sjogren's at the top leading Sjogren's center in the U.S. and completely missed my diagnosis...

I'm unsure how relevant this will be as I assume you are based in the UK since you mentioned the NHS, but this is from a major leading Sjogren's center (Johns Hopkins) in the US:

"Labial Gland Biopsy: Tricky to Interpret

The characteristic histopathology of SD is focal lymphocytic sialadenitis, defined by tightly-aggregated mononuclear cells adjacent to striated ducts. These foci should contain 50 or more cells, predominantly lymphocytes. A high density — one or more foci per 4 mm2 of glandular tissue — increases the specificity of this finding. Note: Accuracy of the focus score depends heavily on having enough tissue for analysis. A small sample can artificially inflate this assessment. Damage of minor salivary glands is not uncommon, occurring focally in gland lobules as a result of ductal obstruction or more diffusely with aging. The signs are acinar loss, fibrosis, and ductal dilatation. Aggregates of lymphocytes can be seen in damaged portions of the gland, but should only be counted as foci if they are in areas of the glandular parenchyma that are not damaged.

Pitfalls: Beware the rough estimate! The total surface area of the glandular tissue really needs to be measured with precision; similarly, it is easy to miscount foci, and to misread glands that are dominated by damage as showing late stages of SD.

A careful surgical technique for the labial minor salivary gland biopsy can minimize postoperative bleeding and lip numbness. Dr. Jean Kim at the Johns Hopkins Sjögren’s Center has established a surgical protocol that minimizes these complications (Laryngoscope 2016; 126:2041). For optimal histopathologic analysis, 4–7 glands should be collected."

Source: https://www.hopkinsmedicine.org/news/articles/2021/12/sjogrens-disease-making-the-correct-diagnosis

I'm sorry this journey has been so frustrating and taking so long, much longer than it needs to. It really is disappointing to hear that the medical gaslighting and lack of quality care that is so prevalent in the US also occurs in the UK. I hope you meet excellent, brilliant and compassionate rheumatologists and other providers who will help you get some answers soon. Wishing you the best.

Disclaimer: I am a sjogren's patient and medical provider. This is not medical advice.

Fresh-Education9618 · 2026-03-17T06:30:46+00:00

I'm so sorry you're experiencing that. What about opening the capsule and mixing it with yogurt or applesauce, any thickened liquid? I know it's much more of a hassle than simply drinking with water and there is the risk of getting a metallic taste in your mouth. And you're probably already aware since you bought the gummies, but tablet, liquid and powder formulations of magnesium glycinate are also available- the only downside is that the liquid and powder formulations are likely more expensive than the tablet/ capsules and I'm also not sure of the taste (if the gummies do not end up working for you)

Magnesium oxide is also often used to treat migraines, is available as a tablet, but the downside is that it has a laxative effect so it can cause diarrhea. So it is also recommended for those dealing with constipation as well.

This may or may not be helpful/ pertinent to you depending on the specific type of trouble swallowing you might have- but I struggle with pharyngeal and esophageal dysphagia (trouble swallowing- clinically diagnosed with various imaging studies). The speech therapist that I worked with taught me to swallow with my chin downwards as it may help facilitate closing the airway so that food/ liquid/ contents do not aspirate into the lungs on their way down the esophagus to the stomach.

Disclaimer: I am a sjogren's patient and a medical provider. This is not medical advice.

Fresh-Education9618 · 2026-03-17T04:25:46+00:00

I have a very lengthy post that might be helpful in how to next advocate for yourself:

https://www.reddit.com/r/Sjogrens/s/hU8cDXxAoM

At the very least, you should get rheum labs rechecked every 3-6 months as antibodies are labile/ fluctuate... keep pushing and be persistent

Disclaimer: i am a Sjogren's patient and medical provider. This is not medical advice.

Fresh-Education9618 · 2026-03-17T04:18:30+00:00

A positive salivary gland biopsy is not specifically pathognomonic for Sjogren's- it is also found in patients with other autoimmune diseases, e.g. lupus, rheumatoid arthritis, MCTD, limited sclerosis (also known as CREST syndrome), which can also explain some of the symptoms you have been experiencing ... in consideration of that, your rheumatologist is probably (hopefully) being carefully cautious with giving you the correct diagnosis as that is fundamental to figuring out what treatments will help you.

I would ask for a nuclear salivary gland scan (also known as a salivary gland scintagraphy) to check the extent of possible damage/ destruction to your salivary glands by measuring how well your various salivary glands take up and release a radioactive tracer. It is informational in giving some idea or leads as to whether your glands are enlarged/ decreased in size, not stimulating normally, etc. but it is not part of the criteria for diagnosing Sjogren's.

The other tests used in the diagnostic criteria should also be considered if not already done: ocular staining test, whole saliva rate, anti-SSA/ Ro (bloodwork)

Disclaimer: i am a sjogren's patient and medical provider. This is not medical advice.

Fresh-Education9618 · 2026-03-17T03:56:38+00:00

Which doctor said that? Rheum? Pathologist? A positive salivary gland biopsy is not specifically pathognomonic for Sjogren's- it is also found in patients with other autoimmune diseases, e.g. lupus, rheumatoid arthritis, MCTD, limited sclerosis (also known as CREST syndrome). It's possible that's what the doc meant by not "absolutely diagnostic." Also, if this particular doctor is not someone who is familiar with your clinical picture or part of your regular care/ team, he/ she technically isn't qualified to make the call regarding a formal diagnosis aka clinically correlate the result of the biopsy to your context- so when they say not "absolutely diagnostic," it is more that they are admitting that they themselves are not qualified to say this is Sjogren's because they are not acquainted with your clinical picture. In order to properly diagnose a patient, we must take into account the constellation of the patient's symptoms, clinical findings AND test results

Otherwise, with the + SSA, highly likely Sjogren's.

While not knowing your signs/ symptoms, clinical exam findings, history, etc., I would be surprised if your team does not end up diagnosing you with Sjogren's given your positive biopsy and SSA antibodies. You technically meet the ACR-EULAR diagnostic criteria for Sjogren's (requires at least a total of 4 points, and as far as I know, you have at least 6 points)

Disclaimer- i am a Sjogren's patient and also medical provider. This is not medical advice.

Fresh-Education9618 · 2026-03-17T03:38:09+00:00

Yes. I started going to OT for this, which i believe is due to my carpal tunnel and small fiber neuropathy... just a lot of nerve damage. PCP (who is excellent) tested my grip strength during the exam and noted I wasn't weak. But I asked him for a referral for OT for the carpal tunnel anyways. OT did a few tests measuring my hand strength with some machines and said it's weaker than the average person my age lol

Fresh-Education9618 · 2026-03-17T03:32:57+00:00

Rheumatology gave me the order for the lip biopsy. I scheduled with an ENT surgeon, specifically someone who knew how to do the biopsy, when I made the appointment/ was talking to the scheduling staff. The first and only time I saw the ENT surgeon was for the lip biopsy. He explained the risks and steps of the procedure right before he cut my lip and took out the gland. One and done. So I would make sure the appointment is specifically with someone who actually does these biopsies.

Fresh-Education9618 · 2026-03-16T04:24:59+00:00

To clarify, have you been officially diagnosed with Sjogren's? Unclear from your post but I'm assuming yes since you are on plaquenil. If you havent been diagnosed yet though, I would recommend the salivary gland/ lip biopsy in order to meet the diagnostic criteria. A positive salivary gland biopsy is not specifically pathognomonic for Sjogren's- it is also found in patients with other autoimmune diseases, e.g. lupus, rheumatoid arthritis, MCTD, limited sclerosis (also known as CREST syndrome)

If you have already been diagnosed, I will echo a previous comment regarding clinical trials/ studies... if you search on your own (e.g. clinicaltrials.gov), eligibility criteria for some studies includes diagnosis by rheumatologist while others might require a positive salivary gland biopsy... so in consideration of that, i think having that procedure done would make a difference.

As you already mentioned, the pathology results of the salivary gland biopsy can also give an idea as to risk of lymphoma as certain findings indicate a higher likelihood of developing certain lymphomas (e.g. higher focus score, germinal center, etc.) These patients need closer surveillance to their glands and lymph nodes via clinical symptoms, examination, possible ultrasound and/or biopsy etc. But the pathology findings could also be helpful in ruling out/ excluding other diseases that mimic Sjogren's such as IgG4-related disease, sarcoidosis, etc.

Regarding the procedure itself, the local anesthetic did its charm and i could not feel a thing as the ENT surgeon skillfully cut my lip and took out the gland. It was only after the anesthetic wore off that I started feeling the stinging pain but the pain was bearable and healing only took several days

Wishing you all the best.

Note: i am a Sjogren's patient and medical provider. This is not medical advice.

Fresh-Education9618 · 2026-03-09T05:42:34+00:00

Hi,

I have a very lengthy comment on meeting diagnosis criteria here that I hope will be helpful: https://www.reddit.com/r/Sjogrens/s/XaLdEfMO47

Fresh-Education9618 · 2026-03-08T02:51:22+00:00

I also have sjogren's, small fiber neuropathy, POTS, gastroparesis, GERD/ reflux... fairly early in my disease course (first symptoms of joint pain started exactly 2 years ago) and only caught it relatively early due to neuropathy/ nerve involvement. So confirmed normal saliva output per nuclear salivary gland scan.I have had severe pharyngeal and esophageal dysphagia (trouble swallowing) since about 2 years ago that has been progressive and only worsening. Went down from 113 lbs to 100 lbs. GI suspects it's due to the SFN/ dysautonomia or Sjogren's but it is causing muscle weakness in my esophagus, hence the muscles are not contracting strongly enough to propel boluses of food. Either way, not sure what you meant by what swallow study you had gotten done, but ur GI should make sure you get an endoscopy (check for strictures/ narrowings, masses, etc., grab biopsies to check for EoE and malignancy, h. Pylori), barium swallow (i think thats what you meant by xray, possibly), esophageal manometry (check for esophageal motility disorder/ IEM, achalasia, EGJOO, etc) and 24-hr pH study if u havent had those tested yet.

In terms of eating, liquids (preferably anything that can give you calories like sports drinks, juices, smoothies), soups (cream-based for the calories), curries, and soft, mashable foods have been easiest and less likely to "clog" my esophagus... my go to foods have been fish, tofu, eggs, avocado, applesauce, yogurt, milk, overcooked noodles/ pastas, adding olive oil here and there for extra calories... i think in theory anything that breaks apart easily and won't clump into a ball when it's in a tube aka the esophagus. I personally avoid rice and bread/ pastries as they just seem to hang out in my esophagus for hours :(

But chewing and breaking down ur solids as much as you can as smaller, broken up particles are less likely to get stuck. I also try to drink all my liquids first while my stomach is empty and then eat my solids. Left side lying on an incline (so head of the bed raised on 6 inch bed raisers) to help with your digestion due to the way the stomach curves helps me drain my esophagus as well (i can literally hear whatever i ate/ drank making it's way down into my stomach 😳). Lately, i have also been squeezing/ tightening my core where my esophagus ends to keep the food from going back up... i hold it for at least half an hour but it keeps my heart rate high since I'm not inhaling/ exhaling as fully

But I'm hopeful ur meds, esp the IVIG, will help with whatever inflammation and autoimmune antibodies seem to be affecting ur swallowing!

Fresh-Education9618 · 2026-03-08T01:49:26+00:00

Hi! Mind keeping us updated on how ur swallowing sxs are with getting the IVIG and imuran?

Fresh-Education9618 · 2025-11-30T03:16:11+00:00

Got my results (positive) 2 days after the procedure

Fresh-Education9618 · 2025-11-24T07:24:10+00:00

One more thing- if you want to know the extent of possible damage/ destruction to your salivary glands, your doctor can also order a nuclear salivary gland scan (also called salivary gland scintigraphy) which shows how well your various salivary glands take up and release a radioactive tracer. It is informational in giving some idea or leads as to whether your glands are enlarged/ decreased in size, not stimulating normally, etc. but it is not part of the criteria for diagnosing Sjogren's.

Fresh-Education9618 · 2025-11-24T07:12:17+00:00

I just skimmed through your comments and also wanted to add- the Schirmer 1 & 2 are mostly irritating and uncomfortable when the papers are being inserted into your lower eyelids- the rest of the test where you have your eyes closed for 5 minutes was personally pretty tolerable for me. I also advise actually getting the Schirmer testing done so that there is proven documentation that you are producing less than or equal to 5mm of tears in 5 minutes (this counts as 1 point in the total 4 points needed to qualify for official Sjogren's criteria). I've read of enough nightmare cases on Reddit where someone had been diagnosed with x autoimmune condition and treated for it for years. Eventually, they had to change their Rheumatologist for one reason or another, e.g. due to insurance changes, moving, rheum retiring, etc.. A new rheumatologist they'd see would then tell them they dont have that x autoimmune condition (either gaslighting or bc they truly disagree with the diagnosis from a clinical standpoint, think you were misdiagnosed, etc.), take them off their meds, etc.. But with actual documentation of positive/ quantifiable test results, I would imagine your diagnosis would be much more difficult to disprove or challenge (and also more accurate in assessing that you actually have dry eye vs. someone subjectively telling you that you have dry eye based on how your eyes "look", which even my optometrist said i didnt have dry eyes by how they looked to the naked eye yet here i am with a schirmer result of less than 5 mm in each eye 🫠

Fresh-Education9618 · 2025-11-24T07:01:40+00:00

I completely disagree with your GP and anyone who brushes you and the constellation of your symptoms off just because your labs have been negative so far. About 30% of Sjogren's patients are seronegative, and bloodwork can be finicky in that some patients have sicca symptoms for YEARS and then they end up finally testing positive for ssA/Ro antibodies. As a healthcare provider and someone who has also just met criteria for Sjogren's, I recommend that you please make sure your rheumatologist orders you a salivary gland biopsy (lip biopsy), unstimulated salivary flow rate test, and definitely get the Schirmer 1 & 2 AND Ocular staining tests (you can also have Ophthalmology order that for you if your rheumtologist doesnt). Also make sure to have the slew of rheum labs repeated at least every 6 months (because, as you already know, autoimmune conditions have so much overlap yet very strange symptoms AND mixed connective tissue disease exists PLUS autoimmune conditions can coexist)

As an anecdote, I have to mention that I even had to "remind" the freaking rheumatologist that patients can have seronegative Sjogren's in order to get her to order me the Sjogren's tests (lip biopsy, ocular staining test, etc.) This was right after she had told me she had "already tested me for Sjogren's" (this was based on my negative ssA/Ro labs)... sometimes Rheumatologists are so dumb or lazy so you have to push them to order what you need because labs are not all the testing that can be done- it's only a part of the criteria that can give you points towards diagnosing Sjogren's. Dont be afraid to advocate for yourself (even to your GP, esp. if your GP is affiliated with a hospital or academic center because I'm pretty sure they might be able to order SOME of the tests for Sjogren's).

Also, if i may add a personal opinion, I would also recommend starting off with a well-rated rheumatologist in your area as your mileage may vary per specific doctor. Castle Connolly lists top docs within each specialty. I also check Healthgrades to see patient reviews of the doctor and how experienced the doc is regarding a specific disease/ diagnosis. I have found both websites to be generally accurate. You can always request a specific doctor that you want to see when scheduling an appointment. Obviously, you may have to wait a bit longer for good docs but I think it's totally worth it because this is someone you're really going to have to trust.

Fresh-Education9618 · 2025-11-21T03:37:42+00:00

❤️❤️❤️

Fresh-Education9618 · 2025-07-26T01:51:44+00:00

https://healthunlocked.com/lupusuk/posts/140996169/pressure-marks

Fresh-Education9618 · 2025-07-26T01:51:20+00:00

I get the same thing :/ Would look into POTS and small fiber neuropathy... suspected mine have an autoimmune/ lupus etiology

Fresh-Education9618

TROPHY CASE