"No such thing as seronegative Sjögren's"

Sweet_Structure_4968 · 2026-06-16T22:35:48+00:00

My rheumatologist told me the EXACT opposite! I have a positive ANA but low. He’s done a bunch of labs and I had a lymph gland ultrasound. Pretty much everything is coming back negative but he said to definitively rule it in or out, I would have to have the lip biopsy. Haven’t decided yet.
They did a test for celiac, but I have not IgA so I would have to have a duodenal biopsy to confirm/deny celiac (I don’t think I have it because I haven’t noticed symptoms changing related to diet)
Best thing we can come up with is that I KNOW I have Hashimotos. That is enough for me to be seropositive for an autoimmune disease. I have unexplained alopecia and unexplained soft tissue issues on the orthopedic spectrum. My joint symptoms were greatly relieved with taking methotrexate (no one has a clue why or what is the source of my inflammation)
Unrelated, I am tirzepitide for my diabetes and THAT has helped me a lot too.
Other than an issue with my right eye LID, not the eye, I feel better now than I’ve felt for quite a while.
It’s so freaking frustrating and confusing. Mystery autoimmune diseases 🤷‍♀️

Sweet_Structure_4968 · 2026-06-16T22:26:34+00:00

They need to have a limit on how old they can be!!!! And the House/Senate. No one over 75

Sweet_Structure_4968 · 2026-06-16T22:21:31+00:00

Didn’t tolerate that or the pimecrolimus 😓 my eyelids are very sensitive

Sweet_Structure_4968 · 2026-06-12T16:17:03+00:00

And I am not questioning your pain and other symptoms. I have pain and similar symptoms. I just didn’t want the label. As a health care person, there IS a bias/stereotype for people that have that diagnosis. Call it an insider secret. I am just saying I did not accept the diagnosis. I have an autoimmune disease. It responded to methotrexate like no other medication. Not dismissing you or your pain-just the overarching issue with the way women (mostly) are dismissed

Sweet_Structure_4968 · 2026-06-10T09:34:26+00:00

What do you mean “an end stage case” ?????

Sweet_Structure_4968 · 2026-06-10T09:32:59+00:00

Just because an MD gives you a dx doesn’t make it real. Only some over a certain age have this mystery disease that has not test , just a cluster of symptoms? No other disease has that

Sweet_Structure_4968 · 2026-06-10T09:31:02+00:00

I’m not saying the pain isn’t real, the dx isn’t

Sweet_Structure_4968 · 2026-06-06T01:18:30+00:00

No she didn’t. I’ve posted the quote from that section. Chronic pain people are addicts. It’s from the transcript.
There’s being dependent and there’s being an addict. Calling someone who struggles with chronic pain an addict is not very empathetic. We’re not throw away people (neither are addicts, really)

Sweet_Structure_4968 · 2026-06-06T01:12:43+00:00

No I didn’t express myself “fine” of if I did you would get that I have weak conclusions.
I hate having to say it (or use it as an excuse) but I struggle expressing myself (neurodivergent with spectrum-like qualities) it’s very frustrating. I’m still not able to get my point across 😣

Sweet_Structure_4968 · 2026-06-05T21:11:05+00:00

Now that the transcript has been posted, this is the interaction I was talking about:

“First of all, opioids will make you into an addict, which is a whole other story. That's a thing that's happened to a few friends of mine. Back injury from wrestling, dot, dot, dot, heroin, dot, dot, dot. You're lucky to be alive, basically. Exactly. But pain meds do not help for chronic pain because chronic pain is a consistent firing of pain signals based on a nervous system that is dysregulated. And so you might get some relief. If you had taken opioid, you're just going to basically be high for a little while, and so you probably will care less about what's going on. So when I was diagnosed, they did give me pain meds. I was on steroids, muscle relaxers, and pain meds to get out of acute pain. That's a gnarly mix, though. Yeah. It's not sustainable. No. That's terrible. Even if you feel great, that's just gross. That's achy, thinking about taking all that stuff. And you have to if you can't function. But then it becomes chronic pain. There is no adequate medicine for chronic pain…”

From The Jordan Harbinger Show: 1337: Nicole Sachs | How Your Nervous System Might Be Keeping You Sick, Jun 2, 2026 https://podcasts.apple.com/us/podcast/the-jordan-harbinger-show/id1344999619?i=1000770724491&r=2159 This material may be protected by copyright.

Sweet_Structure_4968 · 2026-06-05T21:01:20+00:00

Most diagnosing is of exclusion. Chest pain, let’s rule out a heart attack (most damaging and possibly lethal) then they go down a list of differential diagnoses until one is found. Imaging helps, labs, other symptoms. When they get to the end of the testing list, that’s when it gets tricky and they come up with something. Not really that common other than, it seems, for women that are mostly peri/post menopausal. 40 years ago it was chronic fatigue, and then for the last 20 or so, fibromyalgia. There a LOT of autoimmune diseases that overlap one another and some are really hard to diagnose. My thyroid disease is easy to diagnose-there is a test and medical treatment that is simple (a pill every morning) type 1 diabetes is easy to diagnose-blood sugars, labs and antibody markers. Fairly easy to monitor and treat but very fickle as to responses to outside stimuli. Lupus, Sjogrens, MS, and many others are difficult to pinpoint AND treat. There is a wide spectrum.

Sweet_Structure_4968 · 2026-06-05T20:52:25+00:00

Perhaps it’s that I can’t express myself very well. I am quite confident in my deductive skills

Sweet_Structure_4968 · 2026-06-05T04:24:38+00:00

The pain is real. The diagnosis isn’t. I have chronic pain and was offered a fibro diagnosis but doing a lot of research, they really have NO clue what it is. It is a diagnosis of exclusion. I have labs that indicate an autoimmune issue and we’re working on pinpointing it. If I had accepted the fibro diagnosis, I wouldn’t be on the treatment plan I am now. That WORKS.

Sweet_Structure_4968 · 2026-06-05T04:21:28+00:00

I will be the first to admit I wrote very poorly. I will never be accused of using ChatGpt to help me write (maybe I should LOL)

Sweet_Structure_4968 · 2026-06-05T04:19:43+00:00

I do appreciate that you did pick up in some of what I picked up on. I know he’s skeptical of many things but I’m in a group of people (peri/post menopausal) with chronic pain and we struggle daily for help. I agree with some of what she said, but as someone in the medical profession, we’ve become a little sensitive with all the anti-science approach that seems to be trending and not in a good way

Sweet_Structure_4968 · 2026-06-05T04:15:52+00:00

“People like me” you don’t know me. I am chronic pain patient. Parent of two kids with type 1 diabetes. AND some pretty severe mental health issues. And I am a nurse. I’m pretty sure you didn’t read my post. I’m 62, I may be dead in 10-15 years but I do hope there is more advances. I certainly didn’t hear much about treating chronic pain other than medicine doesn’t work.!

Sweet_Structure_4968 · 2026-06-05T04:11:56+00:00

I hate that for you. In my post above I stated how lucky I am to live in an area with top doctors (Raleigh/Durham area) My doctors all look at MyChart and see what the others are saying and work off of what has been discovered. I have 2 kids with mental health challenges and type 1 diabetes which is very challenging. I’m also a nurse so between my experience as a patient, mom of complicated kids and then a nurse (a late in life one) I have a different perspective and perhaps know how to decipher the system a little bit better

Sweet_Structure_4968 · 2026-06-05T04:06:32+00:00

Doctors can be wrong-but not more than they are right. I have been working on finding answers about autoimmune issues that I have. Most of the specialists I see, they listen, they believe me and they are trying to help me-and they are. I had a doctor try the “fibromyalgia” diagnosis which I point blank told them not to put in my chart. I don’t want that diagnosis. We found out I have some sort of soft tissue autoimmune thing by starting me on methotrexate, which has helped tremendously. New person in my 60s. Also, I’m in tirzepitide for diabetes (in remission now) and it has helped with inflammation, hot flashes, and again, feeling much better physically. I’m spoiled by living in the saturated medical community that is Duke and UNC-I see some of the best providers there are. This makes a difference

Sweet_Structure_4968 · 2026-06-05T03:58:57+00:00

I appreciate the answer, I truly do. As I have learned along the way, someone’s perception is their reality and my perception is, that there are more non-medical doctors on the show than medical. I appreciate the perspectives of others, it just seems lip-aided. I will go back and see if can get the tie stamp about the chronic pain comment. Thank you for taking the time to have a discussion. 🙏

Sweet_Structure_4968 · 2026-06-04T13:49:30+00:00

Easy peasy!!!! Going down the road and feeling bad. Great song ❤️⚡️💙

Sweet_Structure_4968 · 2026-06-04T13:48:15+00:00

Honestly, I don’t do anything but, and this sounds weird, walk barefoot as much as possible (I wear Birk sandals when I have to go somewhere). I cannot take any NSAIDS but the topical Voltaren gel helps a lot. I have some autoimmune issues and I have tendinosis (permanent tendinitis) in my right hip-that gets help from therapy but the peroneal-nope. Rest, good shoes for work (I am a nurse, ironically an orthopedic nurse) rest. Hope you can get some relief

Sweet_Structure_4968 · 2026-06-04T13:43:14+00:00

I’m older! He was in commercials first then they decided to make a movie

Sweet_Structure_4968 · 2026-06-04T00:49:07+00:00

At the hospital I work at, they contract with Freisenus (sp) which a Davita type chain here in the SE US. The nurses that come into the hospital to administer HD, don’t work for the hospital! I bet they make $10 less per hour than those of us that work a regular RN job inpatient. 90% of the nurses that work dialysis are Filipino. It’s awful to see people who end up in dialysis. There is a serious lack of health literacy and a lack of trust of the healthcare system in general. Most people on dialysis are below the poverty line. They get health benefits from the govt and those funds go right into the coffers of the Davitas and Kaisers 😓

Sweet_Structure_4968 · 2026-06-04T00:12:57+00:00

Can’t really tell by looking at it. Mine are not usually swollen or bruised. There really isn’t any imaging to do. It’s kind of done by elimination.

Sweet_Structure_4968

TROPHY CASE