Very good lecture.Very good.Well presented

Sjogrens can lead to dysautonomia and mast cell activation this is my issue with joint pain, dry eys, dry everything but the worst is small nerve fibre . Leads to constant pins and needles, burning and is terrible. Also tendon issues , digestive issues, heart rate changes, fatigue, Pots, fainting Most medics do not understand the breadth or scope of it I've had to sort out my own autonomic tests and about to have a small nerve fibre biopsy .. a long road Inflammation for me is above normal but not SO high as RA My focus is using supplements such as bs, vit d k2, omega 3 and dmards

Michigan not Minnesota ❤

Can I speak with Dr. Santos over phone pls.I have behcet’s

I have lupus, with sjogrens this is some info I never knew.

I don't have the SSA and SSB but a high ANA. It took yrs and going to numerous of rheumatologists to find a dr to say you have sjogren's i know you do, let me try another test. She did the early sjogren's panel test and it lit up. She said i knew you had it and she also explained that there's a percentage of people who do not get a positive SSA and SSB test. Now finding the right medicine for me is another challenge because im often sensitive to medicine.

can someone have ms and sjorens. i was dx with ms in 2022. now my skin feels like is on fire and between my neuro and rheumatologist is at odds between one or the other or both. im a stress bucket and stress aint good for anyone one of those diseases. so can someone have both or one?I am so confused

is the joint pain from Sjogren's also referred to as peripheral neuropathy?

I had positive ra test and Ana tests offered methotrexate and plaqunil which I refused for I disagreed with diagnosis of RA. My husband stricken with RA at age 33 and I am not like his symptoms. I am 72. More muscle pain shoulder and lower back pain I take multiple supplements otc. I have dry eyes and mouth . I want to treat this but not with chemicals if possible my dentist says I have stones in both of salivary glands but I don’t have a doctor to turn to.

Very interesting

Good presentation. There's just one thing that I would disagree with; Fluoride rinse. Some studies show that fluoride actually causes dental caries and it also makes bones weaker.

Thank you

Going down the rabbit hole of being diagnosed with Sjogren's now. I've lived with Hashimoto's for 30+ years, fibro, etc.... also carry the Epstein-Barr virus... was very very sick for months with it in high school. My eyes feel like they're full of grit, my teeth break off and chip, get infected and have to be removed, the list is never ending. My wrists are swollen and throbbing, screaming at me with pain. The wrist bones are painful when I touch them, but it seems to be seriously muscular in nature as well. I want to try the HCQ-Plaquenil to see if it reduces the inflammation. If not, since it's been 2 months of pain and immobility, I'm going to try steroid shots in them. NO pills, though. Thank-you Dr. Santos, for such a thorough and complete presentation on this quality of life stealing disease. I know I will be returning to listen to this again and again. It's full of so many helpful nuggets.

My sister was diagnosed with this last year. But she has never had a problem with dry eyes or mouth though. However, she must have had an autoimmune disease since she was born. She had a liver operation at 18 months old, doctors did not know what caused her liver enlargement, they misdiagnosed her with cirrhosis and told my parents to start preparing for her funeral. Then one of the doctors prescribed Prednisone which eventually stabilized her condition. She was fine most of her adult life apart from occasional flair ups and unexplained dry cough.. She is now 45 years old and the symptoms hit her hard in a form of stomach and intestine inflammation. She can hardly eat anything without painful gut reaction. That is how she finally got tested and diagnosed. Everything from the past now fits like a puzzle, including our mother's kidney failure and dry eyes...

The very first time I was diagnosed with SS the test included lupus. If you have Sjogren's should you be tested for lupus over a few years of having SS

Can you take estradiol or does that make it worse?

I'm in CA, a retired RN. I share your frustration w/ most Drs/clinics not being able to correctly dx Sjorgens, after yrs of symptoms. A rheumatologist out of state finally dx me. I won't take prescription meds as fillers are toxins (you can google ingredients). FDA allows them anyway. What I have found very helpful is: rinse mouth at bedtime & if you get up during the night w/ organic sesame oil for the dryness, anu tailani nose drops (ayurvedic), fresh coconut milk drops in eyes followed by hot wet compress & lying down for 20min (use fresh white coconut, put some liquid into clean eye dropper bottle, refrigerate, discard after 2 wks: Hanna Kroeger's cataract remedy), a Rife frequency for autoimmune disease, eyes, etc, and prayer.

I was dx as I was walking out of my rheumatologist exam room where I had just been dx with RA when I asked about the Purpuric lesions on my legs which bleed like crazy when I shaved my legs. He got all excited and called in his PA and used it as a teaching opportunity. But for me, he wrote down a website on a post it and that was it. Needless to say I didn’t got back, the. Next dr I saw closed his practice during Covid and never reopened so I’m now without a rheumatologist. Thank you for you help

Hi so am a teen and am not sure if its from celiac disease but every time i eat gluten I have hives and bad smelly stool.This been going on for 2 weeks now i never have this in my life before i had this i overeat.!!

I was diagnosed with Sjögrens Syndrome or Systemic Sjögrens as part of my Systemic Lupus Erythematosus diagnosis but doctors keep trying to change the diagnosis to SICCA syndrome? I have been on SSDI and SSI for over 13 years now with major back problems and I'm a fall risk and have been under treatment for C-PTSD and BiPolar Disorder with schizoaffective episodes diagnosed and suffer from occassional disassociative episodes. After losing weight my skin has no elasticity to bounce back and I've aged substantially over the past 7 to 13 years. Since Sjögrens Syndrome or Systemic Sjögrens are so alke and co-exist with Systemic Lupus Erythematosus I do not understand why doctors keep changing my diagnosis to SICCA syndrome which only affects the eyes. This is a horribly uncomfortable and painful condition which co exists in me with my Fibromyalgia, Reynauds Syndrome and Phenomena, IBS, Inflammation of esophageal tract and lungs increasing my painful breathing and shortness of breath with headaches, migraines, and petis mal seizures. I am extrenely fatigued most of the time. I'm now 64 years old and unsure why the doctors seem to be trying to downgrade my diagnosese. And yes my dry eyes and dry mouth are absolutely horrific to deal with daily. Thanks for any insights you might provide and for those you have provided already.😢❤

Great overview and questions answered. The one thing I’d liked to hear more on is the destruction of the salivary glands and the onset of over production of salivary. Inside air conditioning dry but in normal and heat conditions over production and extensive neuropathy very painful. How does one stop the excessive saliva, what medications are available? I’m finding doctors I’ve been to here in Australia seem so uninformed on this condition. Currently seeing a Rheumatologist but have more questions than answers.

At last, watching my hives inflammation fade day after day until they completely vanished was such a relief, I went with what I pointed out and within the first 10 days or so the urticaria/angioedema was barely visible! I just go'ogled the latest by Shane Zormander and after 20 days my skin has never been healthier!

I have severe disabling neurological symptoms - and Sjogren's Disease - and I'm a man.... so it definitely 'can' happen. I can't find a rheumatologist that is knowledgeable on Sjogrens in the area I live in Louisville Kentucky. Not regarding the extraglandular manifestations....

I'M SEEING MY GASTRO DR SHOULD I HAVE HIM TEST ME TOO ?

Great. comprehensive video...perhaps the opening can be re-recorded to correct errors, especially the attempt to pronounce Sjogren's. (Although it did make me smile).

I have significant dry eyes x 10 years and dry mouth x 1 year, peripheral neuropathy. I went to a rheumatologist who asked me what difference does it make if the treatment is not going to change? I requested the SSA and SSB which were negative. Lip bx is planned for this Friday. The ENT asked me the same thing. I don't understand what is wrong with these doctors? Aren't they supposed to diagnose? Anyway, my daughter passed at 35 after having SLE since whe was 14. Am I wrong to expect the doctors to help me?

Is there any chance to activate the closed caption? Thanks

Im so confused!! Dr. says he specifically didn’t focus on diet here…however DIET plays a specific roll with this disease. Simple sugar ..yes ..this I understand completely but red meat ? Are we talking about “raw red bloody meat” ?? So confused!! I’m suffering and don’t have a definitive diagnosis yet. I’ve gone down numerous rabbit holes and I’m just trying to feel better! Please help🙏🏼🙏🏼🙏🏼🙏🏼

I have got spots on lung, cyst on pancreas, adrenal cyst

I never knew there was a cure for Lupus until I met Dr Obehi Herbal Home on KZfaq his natural herbs cures me permanently form this sickness I am %100 sure theDiseases never came back……❤😊

I am currently waiting to get tested for Pots and SS. I'm 37 years old and I have passed out without remembering, I have extreme fatigue where I can sleep for 16 hours straight. I get extreme dry mouth, feel like I have drank water in years and extreme, extreme body pain.

Once again i want to appreciate Dr.Auchi for helping me with his herbal medicine to cure my Lupus disease completely, i really suffer from this disease for the past 5year, Right now I'm Lupus negative after using the herbal medicine Dr.Auchi sent to me. I gave all thanks to God for leading me to Dr.Auchi who was able to cure me completely from Lupus disease, Dr.Auchi you are the best traditional herbal doctor in the world God bless you sir Dr.Auchi on KZfaq channel… kzfaq.info/love/6tA16t1IlKx1bY93lc2rcg ❤️❤️

It's July 10 2022: Does IVIG contain the Covid Vaccine or any remnants?

During the period of having this illness, my husband left i and our only son all alone😭,All hope was totally lost, not until i made search on how to cure i and my son, a miracle happened when i knew Dr Iyhere on youtube, i want to say i and my son are cured with his herbal medicine😊

Yet everyone's talking about the coronavirus while FUCKING IGNORING ACTUAL DISEASES!

I live in Arkansas. Been trying to get in a rheumatologist for 20 years. They tell doctor to run a blood test ant say that one is what I have. Multiple symptoms and extreme pain anxiety. I am 70. I believe pcp gave up. Everything is caused by age. !!

wish my doctor would watch this because there clueless

I would like to share my Sjogren's history in hopes it might help someone. I started having major dental issues like cracked teeth or losing my fillings. It then turned into painful joints esp in the feet. Sjogren's never showed up in my blood work. I had a lip biopsy and it showed a high prevalence rate to this day my rheumatoid arthritis or Sjogren's never shows. Fatigue and pain is the hardest. I take Plaquenil and Rituxan I would be crippled and in a wheelchair or my bed without these meds

New thank you! Will be watching later and taking notes!

Not only an insightful presentation but each answer to the audience questions was extremely informative. Thank you! Xxx

I just happened to see this scrolling through my feed. I have Sjogren's secondary to Ankylosing Spondylitis, it causes me allot of issues and certainly takes up more time treating it and preventing complications than my AS does. Zylitol and something called Noz Oil are my best friends. I also take cold drinking water with me where ever I go.

I was cured off my herpes virus with the help of Dr Omole from KZfaq with his herbal mixture

I think this is probably the worst autoimmune anyone can have! I had to retire from my teaching career because of this! I also had 3 major surgeries because of organ failure, in a short time. It’s SO painful to the eyes!

He’s my rheumatologist, but doesn’t treat fibromyalgia. I went back to him later after I contracted Sjogren’s, and had a bad experience with his PA. I sent them a letter and they asked that I come back, but I sure didn’t want to see her!

*Sjögren’s Syndrome is not rare, it is UNDER-diagnosed*. It’s more than just dry eyes and dry mouth! I didn’t start having those until later on in the course of my disease. I began sharing my experiences to find a community where I can talk about it, as it has been *disabling* and also to spread awareness of the connective tissue disease *Here is my story (so far):* I have primary Sjögren’s syndrome (pSS) and recently discovered cherry angiomas all over, with a new band on my upper back (the sign of Leser- Trelat is absolutely true), and bilateral, slightly indurated, erythematous, atrophic, arcuate patches on my cheeks with areas of hypopigmentation just below them, and on cigarette paper skin with some scaling around that, telangiectasiae and acneiform papules Both eyebrows have been losing hair over the superior/lateral aspect- also *highly pruritic* as well as FMF-looking patch on the lower back- all *extremely* pruritic. They recently came about with a surge of hormones (peri-menopause). I went to a dermatologist who had looked at the photos I’d sent ahead of time to my PCP and had already decided when I got to her office that I was working myself up before she even saw me because she spoke to me in her office with a patronizing attitude (which really hurt my feelings, by the way, and as soon as the visit ended, I sobbed while driving home) as she gave a quick glance at my back with a gentle swipe of her hand and then a pat on my shoulder. As an afterthought, she then glanced momentarily (and not with a dermatoscope) at my face and dismissively informed me that she wasn’t worried and that I looked “fine”. There is also a patch of spiky skin (I postulate this is also a variant of MF) near my left elbow and many subcutaneous nodules on my arms, trunk and thighs (some tethered and painful)- all of which were also not examined and were just as quickly dismissed by the doctor due to having family HX of them). Prior to seeing tiny capillary hemangiomas appear all over, I’d also been found to have a Bartholin gland cyst, axillary cyst, acrochordons, and now velvety, intertriginous patches (that I suspect to be AN). In addition to the small moles and new crop of cherry angiomas in a band across my back, there are several small, pruritic, erythematous papules on my chest, face and back, with symmetrical, confetti-type of vitiligo on my face, chest and arms. I get a photosensitive rash on my face, arms and chest (with systemic symptoms). The malar rash has always spared the nasolabial folds prior to experiencing the telangiectasiae there. The 3” follicular patch on my back has perilesional halos. There were other changes in my hair and nails, too (thinning hair, alopecia, deep longitudinal grooves, non-traumatic splinter hemorrhages, Beau’s lines, and distal nailfold dystrophy). Both sides of my family have autoimmune diseases, along with a family history of cancer (few different types- melanoma being one of them), so along with having red hair, green eyes and freckles, I’d insisted on biopsies (unfortunately, she failed to recognize the follicular patch, and did not take a punch of it, but took one nearby, instead). Again, unfortunately for me, she’d sent the biopsies (3 in total) to a pathologist who was not a dermatopathologist and the results came back as you would suspect for early (misdiagnosed) FMF. The dermatologist did not mention that FMF was in the differential to the pathologist, even though I told her that FMF is a concern. CBC and CMP with AI panel with UA showed a small decrease in lymphocytes, anemia (chronic), low lipase (chronic), mild protienuria, slight increase in eosinophils, along with zinc and vitamin D deficiency, but on the whole, WNLs (with the exception of weakly positive ANA by IIF and +SS-A; these had been repeated three times with exact same results). I have had 20 doctors so far (specialists, not including my PCP) and have had to fight tooth and nail for every test I’ve had. I’ve been made to feel like everything is due to anxiety or else they want to say it’s all GERD (which I do not have and was proven by EGD and took every type of PPI for months with no effect) or some kind of GI issue (they always want to say I have Crohn’s with no signs or symptoms except occasional steatorrhea, which coincides with chronic pancreatitis). Other signs and symptoms of pSS which I regularly experience are polyarthralgia, polyneuropathy, polymyopathy, asthma with recurrent bronchitis, unstable angina, previous SCAD episode, HTN and TIAs, neurological decline (mental fog, word substitution, memory impairment, etc.), BPPV, bilateral Frank’s sign, nephrocalcinosis, xerosis, oral aphthae, nasal aphthae, chronic dry cough, Raynaud’s, xerostomia, xerophthalmia, dysphagia (difficulty swallowing due to progressive esophageal narrowing), night sweats, random low-grade fevers, hyper/hypoglycemic episodes (not unlike HHS), palpitations, widespread, (tetany-like) muscle cramping, bilateral flank pain (bilateral nephrocalcinosis), epigastric pain with nausea and diaphoresis (chronic pancreatitis), tendinosis, fasciitis, bone spurs, dental caries, jaw pain, and chronic, burning lower back pain (both mechanical and referred). I also have an adrenal adenoma (which is currently being tested for pheochromocytoma), overactive bladder and obstructive sleep apnea. Having pSS complicates everything because none of my doctors are knowledgeable about the syndrome and have all- except my neurologist and nephrologist- have no answer, give no diagnosis, and subsequently, no treatment (with the exception of HTN, OAB and OSA, along with opioids for joint pain). I’m in pain all the time and cannot work due to the widespread pain and debilitating fatigue, along with hypersensitivity to everything (as soon as I get stressed out- physically or emotionally), I get hives, a malar rash, Raynaud’s symptoms, puffy eyes and am overall, just miserable. I’m not the type to be anxious or depressed, but after all of these tests and health problems, and knowing deep down that something is very wrong, it is starting to really depress me. I’m writing to any and all of the specialists that I know to find help so that the FMF does not progress, or so chronic pancreatitis does not turn into pancreatic cancer, and to find a good rheumatologist (I’ve already dismissed two due to their refusal to diagnose me based on clinical evidence, weakly positive ANAs and +SS-A). After researching all of these issues I’d been experiencing on my own, I am finding that my case is very similar to other people with Sjögren’s syndrome. They also attest how difficult it has been for them to finally get diagnosed (properly).

I’d do anything to get a diagnosis :( 14 years and I can’t get answers Aging rapidly from this stuff

This is the best presentation I have seen on this. Thank you

Wow, what insight! I’m just an ordinary 69 year old woman. Years ago, I was referred to an Endocrinologist for initial evaluation of Sjogren’s Syndrome. At least 25 years ago. Skip a non diagnosed life, in 2013 I was diagnosed with Lymphoma! Thank God, I’m 8 years well, but after listening intently to your presentation, I surely wonder if I have been living with SS all along! My eyes, mouth and vagina are and have been so dry I can hardly see at times, swallow at night and after 50 years of marriage, I don’t have to tell you the rest!!! Going to discuss this with my doctor of 35 years! Thank you so much!

I thought many people with Sjogren's have problems with their esophagus and acid reflux - but I don't recall seeing this mentioned in the presentation (maybe I fell asleep as I watched it late last night).

I have Sjogens Syndrome and Neurological disease. I have a lot of pain, dryness and was recently told I have an abnormal liver test. What should I do now?