Thanks for watching! We're curious to hear your thoughts - what did you think of the video? Feel free to share your stories or ask questions - your input could really help others in the community!
I have some of these symptoms but I also have a lot of the symptoms of p.o.t.s 😩 I really don’t know which one I have and that’s why I’m watching your videos.
Is it possible to have Sjogrens where dry mouth doesn’t happen all the time. I have it sometimes during the night but then I’ll have a period of time that it over produces saliva. I have so many other symptoms that explain what I’m going through but the rheumatologist (FNP) that I saw refuses to look any further once I said that sometimes I don’t have dry mouth. Most of my symptoms come and go and aren’t everyday.
@@Travelbug1975same here. The FNP at the rheumatologist saw me the first of October and made the follow up for January 🤨 but he acts like he doesn’t believe me. That drives me crazy. I have intermittent pain between the jaw and ear. He says oh that’s tmj. Totally not tmj. I have a sister with it and it’s nothing like hers. But I’m just like you. The blood work doesn’t reflect it
I started treating naturally and have calmed MANY symptoms. I was so dry my eye lids stuck to my eyes at night, burned and felt like sand paper. My throat was dry and I could feel food going down and into my stomach. It was shorrible. I quit eating gluten and that slowed inflamation and made a HUGE difference in my floating pain and joint pain. I started taking Saliva Stim and my eyes, mouth and stomach regained moisture. I take a regular natural protocol recommended by a rehumatologist, eat whole food and am focusing on healing my gut lining. And it is working.
Its all about adding moisture and fat. Many forget the lettest,but its important to be sble to maintain the moist%keep the moist . Most people with sjøgrens only get "the dry issue". But it can feel like a lot. Also intestins needs moisture. Avoid soda ,and for every cup of coffee or tea, add one extra glass of water. Lots and lots of added moisture is the key. If sjøgrens attack the inside, a low dose of chemo can do the trick. I have small benignant tumors on kidney, and i lost all the nails completely (not sure if thf loss of nails is due to sjøgtens,it might be the autoimmun deseases that give infections/destroy my joints). Low chemo injected once a week fixed a lot , it even made my nails start to appear ,but I still have to add moist and fat. I always remind myself ,non of my diagnoses are really serious. Its just about finding the right way to handle it.
Sjogren's has destroyed my body and now affects my lungs, heart and kidneys. My rheumatologist, who is great, is keeping track of swollen lymph nodes several places in my body. I've had Sjogren's diagnosed for about 20 years but only recently has correlation between my anemia and low vitamin D been connected to this disorder. I also have severe osteoarthritis, 3 knee replacements, shoulder reconstruction and my spine is disintegrating with end plate displacement in 3 areas causing fractured vertebrae. Have gone from walking with a cane to pretty much homebound invalid. Sjogren's is serious yet so few know about it. My family thinks I'm just lazy and making stuff up to get out of things. Maybe a future video could address the emotional aspects of a Sjogren's diagnosis
I'm in about the same place as you are. Sjogren's has destroyed both hip joints, my lower back, a normal life, relationships, etc., etc., etc. I can tell it's working on my kidneys, gastrointestinal system, left shoulder, and right knee as well. Nutritional malabsorption has caused repeated anemia and low vitamin D. The way family sees it is extremely distressing. They just don't GET it! Most medical folks think it's just dry eyes and dry mouth. The fatigue, weakness, and lack of stamina are miserable beyond description. I take many supplements and keep researching. Microdosing Amanita Muscaria has eliminated the dry mouth and eye issues, btw. I discovered that by accident and pass it on whenever possible.
No way you have been diagnosed for 20 years and now they are connecting your vit d and iron defficiencies...ditch that rheumatologist, these are fairly common in sjogrens
@@patiakrelesmy rheumatologist is relatively new.(2 yrs) she's the one catching and caring for all these issues. My rheumatologist before just saw me every 3 months and gave me pain meds. No bloodwork or anything
@@patcartbarhello.. me too suffering chronic pain😢 im really depressed 😢 idk what to do, doctors no found in my lab tests.. if said i think this is fibromyalgia.. they only smile, and said its only in my mind.. 😢😢
@@augustfourteen1680 It's beyond frustrating and insulting when they do that. They simply can't bear to admit they don't know what you have or what they need to do to find out. That you've gone past their level of knowledge. Research as much as you can every day and find other doctors. Thinking Fibromyalgia is just in your mind shows they're 40 years behind with the science!
Our adopted daughter has 5 autoimmune diseases: Sjogrens, RA, lupus, scleroderma, Raynaud’s. She has started taking vitamin d3 and cayenne pepper. Within an hour of taking cayenne pepper, she was able to straighten her fingers. It is working good for her. I’m going to recommend she starts vitamin E for her dryness. Lemon water is good for cleaning the kidneys. There are natural things that can help. I follow Dr. Barbara O’Neill. She is great. My husband started Ceylon cinnamon capsules for his Type 2 diabetes and gotten off metformin. His A1C is down to 6.2. He also peripheral neuropathy and started doing cayenne pepper wraps on his feet. No more pain meds and all the stabbing pain is gone. He can actually walk on his toes now thanks to Dr. Barbara. Praying you all find healing and ways to minister to your bodies. Don’t give up.
Thank you Dr. Yu- BRILLIANT VIDEO! I was diagnosed with Sjogrens long before most Dentists/Doctors knew what it was. I even went to be examined by many different doctors at Johns Hopkins in Baltimore, they even drew blood, did a lip biopsy, checked out my saliva, and checked out my eyes for a Sjogrens national testing. Makes me now wonder, in years past there was calcification in my left parotoid which I was told to suck lemons to resolve it, but during the study, this was the side that produced less saliva. I walked away from Johns Hopkins as inconclusive but most probably, which at the time I was not convinced. NOW, many years ago, but now I am convinced, Sjogrens with debilitating joint/hip and knee pain with no swelling. I can barely swallow and never was able to lose weight or the horrible itchy rash until I went on a total carnivore diet and no sugar. Previously on fruits/veg/chicken/fish is all that I ate. Thank you for addressing the muscle aches and weakness, because of this I am barely mobile. WONDRFUL VIDEO! Makes me rethink my rheumatologist. WHY is it that ONLY prednisone gives me any relief?
Prednisone is the only thing that works for me as well. I did not think my sjogrens was a big piece of my multi faceted diagnosis. No one ever really asks about it (only if my mouth is dry). Now i wonder if i need to look into it further.
@slomo, OMG I was in the hospital for Tacycardia I also had lung issue which they said was bronchtis that I never had before but I have other things and came accross this anyway they had put me on prednisone and I couldnt believe how much better I felt all around, mind cleared breathing better, didnt hurt as bad could think better had more energy, if I could Id take it all the tme but they say you cant.
Thank you so much for making this video! I’ve had all of these with my Sjögren’s except for kidney issues and lymphoma (thank goodness!) My weight dropped from 130 to 105 while I was consciously taking high calorie protein shakes trying not to lose weight. My Rheumatologist said it was unreal to my Sjögren’s (which was raging at the time and incredibly painful) and my IM doctor’s response to my visit was “you’re the only woman I’ve had who is worried about weight loss.” I was sure that it was related to my Sjögren’s and they responded as if I was crazy. Needless to say, I’ve since changed doctors and with increased doses of immunosuppressants I am at a healthy weight again and the other symptoms improved as well. I’m so grateful for your video - thanks for providing accurate education about Sjögren’s and emphasizing that it’s more than dry eyes and dry mouth!
I have never heard a better explanation of Sjogren’s from the medical world. Thank you!! This is wonderful. On to your next video….btw I was diagnosed 5 years ago after I went into a severe flare up that my GP could no longer dismiss & ignore.
Im so glad you mentioned the early sjogren's panel test, many drs do not mention it or know of it. I went to about five rheumatologists before i found a dr that tried the early panel test. My ANA would always come back positive but my SSA and SSB would be negative for years. However, i had about 15 years of symptoms that was getting worse. Finally, the early sjogren's panel came back with several areas elevated and i was finally diagnosed in 2018.
I've never heard anyone talk of electric shocks. I get them through my right back shoulder blade area. It zaps then it's gone. It will do it several times before it stops. I have needed two total shoulder replacements for years, but I don't know if that has anything to do w/ it. Are the electric-like shocks part of Sjogren's, too?
I’m having the same thing. I thought I was crazy but every time I go to dry my toe it feels like I’m being shocked by electricity and my joints hurts so bad. I feel like I’m losing use of my hands and that’s scary to me. Thanks. Take care ❤
It is really tearing up my mouth,bladder, fatigue,spin,eyes, reflux ,TMJ and OA. I had a nerve test on my legs and back last week. 😢😢😢 I am just getting out of the bed. I find Systane Eye gel works better for my eyes. I have spent over 30,000 on my teeth and I don't date. I haven't dated for years. I wouldn't put anyone through this hell. My lungs are starting to bother me. You need a great Neurologist.
I’m sorry your going through this I’ve been struggling with a lot of issues for months thst are similar and wasted money on different specialists my neurologist just checked mri for neck and spine and didn’t find anything wrong apart from some curvature I’m still waiting on a nerve conduction. Test and doesn’t rheumatologist check for this sjrogens?
🥺OMG. This is me. !! # DITTO. & No 1 will listen. Even my N.P. won't look into further. & Rheumy. Only wants to put us on roidz !! / Plaquenil / other Rx s .. That cause way to much side effects. !! Irreversible organ' etc. Issues. 😢
I have Sjogrens, which was diagnosed with a lip biopsy. Recently, I was diagnosed with MCTD (mixed connective tissue disorder.) Could you please do a video on MCTD?
I have been diagnosed with Lupus and Rheumatoid Arthritis but feel it may be Sjogrens..I have been eating very clean and healthy but I keep getting worse. My lungs are burning, all the S symptoms.. now what? 😢
Lupus sufferers often develop symptoms from other autoimmune diseases...I know. I have lupus, symptoms from Sjögren's, RA That's where term mixed connective disease comes from.
@@tracyjohnson5023yes. I have lupus and Sjogren’s. It sucks. I’m eating mostly clean and trying to go carnivore. Working on healing the gut. Takes time, though, so try to be patient.
Im being tested - not completed but I've got at least 9 of these symptoms - soreness muscles-weakness of limbs, arms, legs- dryness etc.. Thank you doctor for this information..I'll add the info to my file for my next appointment ❤❤😊
My mouth has been sooooo dry for the last around a year. I asked my dentist to see if anything could be wrong...he said no. My mouth is so sensitive to toothpaste or anything too salty or sweet. Have had Reynaulds for years. Osteoarthritis and dry eyes & neuropathy and joint and muscle pain too.
It took over 10 years to be diagnosed with this and it’s kicking my behind. I’m so exhausted. Mentally and physically. I also have AS HLA-B27 positive.
Hi. Really struggling here in Tennessee to find doctor to manage my Sjogren's. This video so informative. Just told on Tuesday of last week by rheumatologist that Sjogren's was just dry eye and dry mouth. Explained my other symptoms pain, abdominal issues, brain fog, dehydration-the rheumatologist told me Sjogren's does not do that. I was being treated by a very knowledgeable doctor but unfortunately he passed away. Any help with finding provider greatly appreciated.
THANK YOU! I’m going to show this to my doc next week. I’m 65, born with nail-patella syndrome. 10yrs ago, I had a thyroidectomy, Graves Disease, after a thyroid storm threw me into STEMI. We had been unable to control my extreme hyperthyroidism with medications. Now? After years going between synthroid and Armour, my TSH last week was 40…at least it’s DOWN a bit. 🙄🤷🏼♀️. For some strange reason, my docs like to associate my symptoms with my NPS..And YES, I can understand some..I was a spontaneous mutation, basically have everything associated with NPS…to an extreme. NO nails, NO patella, glaucoma & osteoporosis diagnosed in my 30’s…and only 1 kidney, last GFR was 38, but it didn’t start dropping until the past 6 months. Now, for things not normally seen in NPS…Several instances of organ displacement, including my thyroid, parathyroid, former gallbladder, and many anomalies with muscular-skeletal anatomy. As for sjogren’s: dry eyes, mouth and chronic sinusitis. Dysphagia, chronic gastritis, GERD (most GI issues may be related to 25yrs of NSAID use-I’ve had bleeding ulcers for over 20yrs now & damage to my stomach’s cardiac valve). Chronic pancreatitis with buildup of sludge in pancreatic and hepatic ducts…(no hx of ETOH or other hepatic toxins), Reynauds, Mitral valve prolapse, synovitis (NPS?) and pre-tibial myxedema they promised me would go away after my surgery..it hasn’t. Other things I’ve had diagnosed in recent years..CHF, aneurysm in basilar artery, thrombocytosis (idiopathic 🤷🏼♀️) …I know I’m missing some..it’s been a rough day. Yes, I’m a former healthcare professional. No, I haven’t seen a rheum. Why? I live in rural Pa, legally blind and don’t drive…AND, I’m on Medicare. Unless I’m near a teaching hospital; most docs up here want nothing to do with me. I’ve even been refused by docs in Scranton, the nearest city, because our Medicare transportation is so undependable. I’m currently scheduled for surgery…tentatively, for the aneurysm, in March, in Scranton. My girls are coming to make sure I get to my pre-op tests and surgery. I hate to be morose, and believe me, I have no s ideation. However..as much as I’d love to see my only grandchild come into the world, as I told my therapist (who I waited over 3 years to get an appt with..my 31yr old son passed from a similar aneurysm 3 1/2 yrs ago. He was like my twin with NPS-same expression. He also had an issue getting healthcare-he’d been in another country, and had no insurance here when he returned, supposedly for a short time, in Dec ‘19. He got stuck here. He had just received approval for his return VISA when he tested positive. About a month later, he was having back pain..our 1, slightly anomalous kidney’s, were deemed high risk for clots..no one would see him. After he passed, he not only had the aneurysm, his kidney was full of small thrombi. Yes, he also had a high platelet count), as I said, I don’t mean to be morose, but I’m a realist. I have also always had an advance directive putting quality over quantity. After my primary retired last year, a new pain mgt doc slashed my pain meds by 90%. I no longer have much “quality”, I’m in bed most of the day, switching between ice packs and my heating pad. I have no history of misuse..quite the opposite. I insisted on coming off the fent patch 10yrs ago, then insisted I come down on dosages twice. I made the mistake of being honest, showed him extra prn meds I had-from about 6 months of scripts. Last month, he said I don’t need anything. He plans on stopping the one I have next month. There is no one else willing to see me. I can’t just live the rest of my life in bed, in tears on the days I attempt to clean. And I refuse to go to a nursing home. Before he cut the meds, I had a relatively normal life..I cooked, cleaned, painted, wrote, did yoga. Why should I fight to help myself when no docs are willing to help me? Sorry..as I said, it’s been a rough day.
Just watched some more of your vids!! Great minds think alike 😉. I have primarily, a green, fruit & veggie diet..occasional chicken. I drink lots of smoothies and make lots of stir fry..& rice. I DO have cravings for my oatmeal or “congee” breakfasts-with fruits..and sourdough bread. When I said above that my late son spent years outside the country? He was in China, his former fiancé is an MD in both Hong Kong and Shenzhen. We’re still in touch. I take most of the supplements you suggest are anti-inflammatory. Angie has sent me tea pills..TCM, for different things which helped to various degrees. I should have also mentioned, on top of OA, diagnosed at age 16; I had a “complicated compression fx of L1-L3 at age 38, MANY other fractures since..these days, mostly stress fractures. I was diagnosed w CFS about 20yrs ago, pos ANA (clarify: I’ve had 2 pos ANAs, 1 neg), no other symp of Lupus, so 🤷🏼♀️. These days, when the pain gets really bad, I occasionally take kratom..in low doses bc of..I’ve read both pos & neg studies. My primary is NOT a fan of ANY supplements. I also have low THC/high CBD gummies, made specifically with terpenes targeted for anti-inflammation. The company is great..the 2 guys have worked in labs testing terpenes for 25yrs. Lately, I’ve been taking 1 at night..it helps, but I still wake up every 2 hours in pain..it’s not unusual for my hip, shoulder or even my knee to subluxate during sleep. My only issue w the gummies..I have to keep water or tea next to the bed…the dry mouth is horrible. If you can think of anything for my PA next week, let me know. She’s not as accepting for my self-advocacy as my now retired MD primary was..but..she’s better than my pain mgt doc.
Thanks as always Dr. Yu. YES! This video was quite informative regarding all the symptoms of Sjogrens' Syndrome and I didn't realize at the time when I was diagnosed with it along with Lupus 4 years ago that there was more to it than dry eyes and mouth. When you took a look at my labs as a virtual patient and was so bummed then about even taking Hydroxychloroquine I was in tears. But the best thing I liked about your work is you are holistic and look into more ways for healing than just taking drugs. Eating VEGAN for 4 years, and taking processed foods and sugar out of my diet has energized me so much. I can't wait to hear what solutions you may have to start with to relieve these 13 symptoms on a physical and mental level. Thanks again and stay happy! 🙂-Lin
I have several of these symptoms, and I have suspected that I might have this. Unfortunately, there are no doctors in my areas that have your expertise, and obvious passion to help people with this disease. I have pretty much been on a slow decline for the past few years after acquiring untreated Lyme disease.
Excellent video! I was diagnosed recently with Sjogren’s. My main symptom was muscle weakness and after a muscle biopsy, it was determined that I have Immune Mediated Necrotizing Myopathy.
I tested negative for Sjogrens but do have POTS, hEDS, Fibromyalgia, osteoarthritis and other things. I want to be checked again. Excuse me while I go apply eye drops, again, for my dry, burning eyes.
I have ild with an annoying chronic cough. Over the years the scarring has worsened and i have some fibrosis. My pulmonist and the 5 diffetent rhuemotoligists i have had have always had the "it is what it is" kind of approach. I know it cannot be cured, but can it be slowed down? Can i improve my lung function and health?
@@nicolletteg9927 sorry to hear that. How long did the ild progress until you needed oxygen? I hope you are doing well and taking care of yourself. It is frustrating and really wears you down. 💙
@@courtneytirak7014 ILD diagnosis came about a year or two after Sjogrens diagnosis. I think I went too long without proper treatment because the doctors didn’t know what was wrong with me. Once I got some answers I was put on 10 or 20 mg of prednisone and was doing better. I think my rheumatologist reduced it too soon, next thing I know I’m constantly coughing and hacking all the time. So much coughing I have developed a hernia, I’m short of breath and get tired quickly. Things just went downhill quickly when the dosage was reduced. That’s when I was told I had ILD.. Now I’m just praying to God to help me manage it all, watching what I eat and trying to incorporate some physical activity, take meds/vitamins etc…it’s a lot but hanging in there! I don’t know if the progression slows down but I am trying to stay positive and hope it does.
@@markmayer508 The weird thing is, it's actually LESS expensive, because you aren't buying a lot of other stuff-- shopping and cooking are way easier, too.
I was diagnosed with SJOGRENS SYNDROME, my both forearms and fingers are pain numbness and tingling on my right hand side all the way to legs & foot. Please advise which doctor I am going to? Thank you 🙏🙏🙏
Joaquin’s, I’m not dr or in med field. I know without a doubt…I hv Sjogren’s.. my dr poo poo’s it! I did come across an interesting video re Vitamin B6 deficiency and found this could be part of my problem, dry eyes, inflamed tongue, lips, dry mouth. While you investigate your possible SS symptoms, look into this B 6 deficiency video. There are many videos on subject. Dr Berg is one.
Me too suffering chronic pain.. i thought its side effect of the covid vaccine,, so i googled my symptoms and its like having neuralgia,, neuropathy and fibromyalgia 😢😢😢 its painful tbh..
Do you see any correlation between Sjogren's and immune problems? I have IgA deficiency and CVID. I have extreme dry eyes and mouth and dental issues as well as burning mouth, bad taste and burning tongue. What tests do you recommend for diagnosis? I literally have all of the symptoms you mentioned and yet my Rheumatologist said I don't have it. Chronic Bronchitis and Pneumonia as well.
This was eye-opening. Dx'd with RA (Hands) Sjogren's and Ehlers Danlos III. 8 joint replacements (only 1 from accident), 3 level back fusion, future 2-3 cervical fusion, dry eyes, skin, mouth and vagina, but ANA neg, muscle atrophy for no reason.Didnt realize sjogrens affected bone. They don't have the EDIII gene identified, so they can't distinguish between the two. RHEUMATOLOGIST got cancer and closed office so am hunting for a new one. Went to only other one in area 15 yrs ago wondering why so many joints going bad and she said "just OA" and acted as if not interesting enough for her. Will have to go out of area to find good one.
Thank you for thid vidio. I jave been dx with sjogrens. But have not heard of these blood studies. Thank you . I am going to ask my Rheumatologist for these test. I have do many of these symptoms I have learned so much.
I have positive antibodies postive- I have have a post Ana and negative I have symptoms of this on and off my entire adult life right down to dental issues early and difficulty wearing contacts. I even saw a rheumatologist a couple years ago that said I didn't need to see him - 2 years later in soooooooomuch joint and muscle pain get referred again and she right off the rip thinks sjogrens (of which I had never heard of) and tests showing positive for antibodies Now what to do about it I still hurt way more all over than I think i should- and watching this video I'm a little upset that so many of my symptoms throughout the last 30 years are on this list.
Thank you for this information as I currently do not see a rheumatologist, but have been diagnosed with RA in 2017, psoriasis in 2019, and Sjorgens in 2021. I have many of these symptoms you spoke of so I will definitely look for a rheumatologist after the holiday. Again thank you!
Great video well explained, thank you!! I’ve been seeing my Rheumatologist but this explains it simply when at times I’ve been confused. Would like more info re the RA factor and diagnosising. Markers reveal positive but Rheumatologist says no it’s OA. I’d like to be sure.
recently tested positive ANA, negative SSA/SSB. My VA Rheumatologist said I could have positive ANA but not have autoimmune disorder. For about 10 years I’ve had joint pain in my hands that comes and goes. In cold weather I get extremely freezing hands,feet,nose AND butt 😮for a few years in the summer I was having burning feet episodes that the podiatrist couldn’t explain. Dry skin, eyes and mouth (possibly worse w/medication) My VA doctor wants to be all -let’s talk about it in 6 months….You’re the only doctor who explained the comes and goes arthritis. (Are these symptoms flare ups?) I’m hoping you can help with a comment (and you’re in Los Angeles) I just started a new turmeric, just worried like anybody else.
Oh yeah! SWOLLEN hard neck Lymph nodes for a few years. My voice now hurts/gets hoarse. After camera exam, the otolaryngologist says it’s just vocal trauma. It makes me sad to think that talking/laughing a lot could cause swollen lymph nodes… like I’m 48 and been yapping all my life. And/or could dry mouth from medicine cause swollen lymph nodes? I had them before the medication. Ooooh, I know you get lots of comments, I hope you see this.
I have all these symptoms bar reynauds (but my toes do look yellow sometimes) and the kidney involvement. My doctor agrees it’s very plausible I have Sjogren an and I am waiting to go to rheumatology. I had RA as an adolescent from 16-26ish and then it went into remission without medication. I am now 44. I have had a positive ANA in the past but usually test negative. I have had neutropenia for several years and anaemia. My arthritis was mostly seronegative and I have negative RF even now. I am worried my bloods won’t show much in terms of the necessary markers and it will be a deal breaker in terms of diagnosis
Can you make a video talking about the risks if any of taking a wait and see approach if a patient presents inflammatory markers and positive for sjorgrens but no symptoms, thank you
Oh I hope so. I have Meniers and it’s been rough with all the rain. I lost hearing in my right ear and my balance is so bad I got both MCTD and Meniers after a long bout of Lyme disease. With Lyme disease I couldn’t rip a piece of paper in half because of the pain. My blood work always shows Sjogren’s,Lupus and other diseases,all after the Lyme infection
But what do you do when doctors ignore your symptoms. I have Celiac & psoriatic arthritis. A lifetime of facial swelling and teeth removal for infections not there, burning tounge. My new dentist put my on perscription toothpaste for dry mouth said my tounge was damaged or smooth(?) Diagnosed by eye doctor with dry eye and gynecologist with vaginal dryness (very painful) extremely cracking dry skin and my Rheumatologist just tells me no I dont think so. I've had these symptoms for years and all my doctors ignore me when i bring it up. Guessing its not showing up in labs. They seem more upset i did my own research than I have theses symptoms. Im so frustrated I dont want to be THAT patient but Im so tired of fighting my body and trying to get docs to listen.
How do you usually treat sjogren's? I have sjogren's, antisynthetase syndrome, polymiositis, joa1 positive and reungards. I have ild and did not realize it could be from the sjogren's. Is there a separate treatment or is it usually all treated together?
I have Ra for 40 yrs. I have Sjogrens and it flared up so bad when I started going thru menopause.. I'm bedridden and miserable. In so much neuropathy pain and heaviness. Can't sit in my wheelchair long. Thank you so much....
Could you please do a video on treatments for Sjogrens that actually work. I have Sjogrens, ILD, derma and polymyositis, I am on prednisone and it seems to work better than the other prescribed medication I am on. My rheumatologist has reduced the dosage from 10mg to 5mg. 5 doesn’t really do much of anything, but ten keeps me feeling as close to normal as possible. Prednisone and a Tylenol really seems to help. I’m looking for natural remedies that are better for you.
Carnivore diet. I've been carnivore for almost 5 years. Only had one flare up. Caused by carrageenan in heavy cream. I can sleep without ointment and haven't used eye drops in all this time.
Good information , recently diagnosed with SS,MCTD ,IBS eye to stomach muscles weekness reflux and indigestion problem Dr started steroids 20mg to now reduce 5mg , can explain how to come out from MCTD
I have ALL the symptoms of Sjögrens INCLUDING Lymphoma in the form of CLL. But no doctor will acknowledge a positive diagnosis of Sjögrens. What the hell!
I do meet some of these criteria but have not lab tested positive. I did have the lip biopsy but had the rare reaction of numbness with the lip. Not enough samples were taken. Based on findings, felt important to repeat according to Johns Hopkins. I never did as was out-of-pocket procedure plus numbness lasted for years.
Any one with headaches? I have lupus and I think I’ve developed Sjorgren’s also. But the headaches are debilitating. I don’t know who can help. Migraine meds don’t.
@@cindylou1108 before I was diagnosed with Sjogrens I think about two years prior I used to get debilitating cluster headaches. I went and saw a neurologist, try to go when you are in the thick of the headache if possible. I don’t know if there’s a correlation between the two, but I wish I knew back then to ask more questions. I really hope that you get relief and feeling better soon.
I would like to know how high should the Vitamin d Ievel be? and what about missing/Broken vitamin D receptors? can't the blod level be high, but the cells cant absorb it? So your cells are missing it even though your blood levels are fine😮
Sjogren's has made me lost 3 pregnancies at every 16 wks plus. My rheumatologist never manged me well. Just had miscarriage in feb 14, 2024. Its keeps attacking the heart of the fetus 💔. I was given prednisone 10mg to take, which didn't work. Does it mean that, patients with Sjogren can't carry baby to term or near term?
Oh, so sorry. I hope you had understanding and live6 to help you through heartbreak. I did as well. Lost many, but a couple i. 2nd trimester. I was able to carry 2 to 37 weeks, but high risk, on bed rest with both at 27 weeks, in labor. One on terbutaline. NO family support made tougher. +ANA over 35 years. So tired sometimes literally can't get body to move. Recent GI dr on intro visit sent me to acupuncture bc thought lymph nodes blocked. No diagnosis. But drs been sending me for all different cancers screens.
I have SLE and Sjogrens disease as well, along with secondary Raynaud's syndrome. Apart from eye drops and artificial saliva, which is about as much use as a chocolate fireguard, i get no other help or information from my rheumatologist at all. The dry mouth and eyes are unbearable and cause significant issues. I wish i had more support and information from my rheumatologist. Than you for your video. It helps.
Research Amanita Muscaria microdosing. I do this and it has completely relieved my dry mouth. I take a moistened fingertip, dip it into the powder and take that small amount every 3rd night. I found this out accidentally while trying to relieve the fatigue.
I went to a dry eye specialist, Dr. Zucker in Santa Barbara. 1,000 mg of black currant oil, 1,000 mg flax seed oil and 3,000 mg of fish oil a day helps. Regener eyes pro drops, warm compress on eyes for a few minutes once a day and then gently massage your eyelids.
As if it couldn't get any worse. I'd like to know if taking medications, supplements or eating certain foods even water causes unrelenting worsening burning mouth, dry mouth, stomach pain, nausea is this really possible or just me😢
Have you tried oil pulling in your mouth? Raw organic coconut oil gives moisture, gets rid of bacteria in the gums and mouth. I take a teaspoon of the oil and let it melt , next, swish it all over inside your mouth, including your gums and teeth. I do this 5 to 10 minutes THEN SPIT IT ALL OUT IN A TRASH BIN. Don't ever swallow the dirty used oil, its carrying all the bacteria that you just pulled out. My mouth. Teeth and throat feel clean and moist. Hopefully this information gets applied by you and everyone reading it😅 oh and the oil pulling has quickly removed dental pain.🤞👍🫦🦷
I am 54 and when was 25 diagnosed for rheumatoid arthritis but after 6 years told me that it is primary Sjogren disease. Now I have pulmonary problems, heart disease, irritable bowel, pain , fibromyalgia, my head is like a Moon and constant dry eyes and mouth and nose, have rush at legs and neck... can I just wait for lymphoma? Thank you.
Thanks for watching! We're curious to hear your thoughts - what did you think of the video? Feel free to share your stories or ask questions - your input could really help others in the community!
I have some of these symptoms but I also have a lot of the symptoms of p.o.t.s 😩 I really don’t know which one I have and that’s why I’m watching your videos.
What if I have most of these symptoms, but my bloodwork keeps coming back normal?
Me too.
Is it possible to have Sjogrens where dry mouth doesn’t happen all the time. I have it sometimes during the night but then I’ll have a period of time that it over produces saliva. I have so many other symptoms that explain what I’m going through but the rheumatologist (FNP) that I saw refuses to look any further once I said that sometimes I don’t have dry mouth. Most of my symptoms come and go and aren’t everyday.
@@Travelbug1975same here. The FNP at the rheumatologist saw me the first of October and made the follow up for January 🤨 but he acts like he doesn’t believe me. That drives me crazy. I have intermittent pain between the jaw and ear. He says oh that’s tmj. Totally not tmj. I have a sister with it and it’s nothing like hers. But I’m just like you. The blood work doesn’t reflect it
I started treating naturally and have calmed MANY symptoms. I was so dry my eye lids stuck to my eyes at night, burned and felt like sand paper. My throat was dry and I could feel food going down and into my stomach. It was shorrible. I quit eating gluten and that slowed inflamation and made a HUGE difference in my floating pain and joint pain. I started taking Saliva Stim and my eyes, mouth and stomach regained moisture. I take a regular natural protocol recommended by a rehumatologist, eat whole food and am focusing on healing my gut lining. And it is working.
What is it and where do you get Saliva Stim?
@franhar8292 th-cam.com/video/vmBHj-5SUWY/w-d-xo.htmlsi=7vnRhzbnKPkMBeKl
Its all about adding moisture and fat.
Many forget the lettest,but its important to be sble to maintain the moist%keep the moist .
Most people with sjøgrens only get "the dry issue".
But it can feel like a lot.
Also intestins needs moisture.
Avoid soda ,and for every cup of coffee or tea, add one extra glass of water.
Lots and lots of added moisture is the key.
If sjøgrens attack the inside, a low dose of chemo can do the trick.
I have small benignant tumors on kidney, and i lost all the nails completely (not sure if thf loss of nails is due to sjøgtens,it might be the autoimmun deseases that give infections/destroy my joints).
Low chemo injected once a week fixed a lot , it even made my nails start to appear ,but I still have to add moist and fat.
I always remind myself ,non of my diagnoses are really serious. Its just about finding the right way to handle it.
Sjogren's has destroyed my body and now affects my lungs, heart and kidneys. My rheumatologist, who is great, is keeping track of swollen lymph nodes several places in my body. I've had Sjogren's diagnosed for about 20 years but only recently has correlation between my anemia and low vitamin D been connected to this disorder. I also have severe osteoarthritis, 3 knee replacements, shoulder reconstruction and my spine is disintegrating with end plate displacement in 3 areas causing fractured vertebrae. Have gone from walking with a cane to pretty much homebound invalid.
Sjogren's is serious yet so few know about it. My family thinks I'm just lazy and making stuff up to get out of things. Maybe a future video could address the emotional aspects of a Sjogren's diagnosis
I'm in about the same place as you are. Sjogren's has destroyed both hip joints, my lower back, a normal life, relationships, etc., etc., etc. I can tell it's working on my kidneys, gastrointestinal system, left shoulder, and right knee as well. Nutritional malabsorption has caused repeated anemia and low vitamin D. The way family sees it is extremely distressing. They just don't GET it! Most medical folks think it's just dry eyes and dry mouth. The fatigue, weakness, and lack of stamina are miserable beyond description. I take many supplements and keep researching. Microdosing Amanita Muscaria has eliminated the dry mouth and eye issues, btw. I discovered that by accident and pass it on whenever possible.
No way you have been diagnosed for 20 years and now they are connecting your vit d and iron defficiencies...ditch that rheumatologist, these are fairly common in sjogrens
@@patiakrelesmy rheumatologist is relatively new.(2 yrs) she's the one catching and caring for all these issues. My rheumatologist before just saw me every 3 months and gave me pain meds. No bloodwork or anything
@@patcartbarhello.. me too suffering chronic pain😢 im really depressed 😢 idk what to do, doctors no found in my lab tests.. if said i think this is fibromyalgia.. they only smile, and said its only in my mind.. 😢😢
@@augustfourteen1680 It's beyond frustrating and insulting when they do that. They simply can't bear to admit they don't know what you have or what they need to do to find out. That you've gone past their level of knowledge. Research as much as you can every day and find other doctors. Thinking Fibromyalgia is just in your mind shows they're 40 years behind with the science!
Can you please talk about osteoarthritis 💐thanks
I was recently diagnosed with osteoarthritis. It’s so painful
Our adopted daughter has 5 autoimmune diseases: Sjogrens, RA, lupus, scleroderma, Raynaud’s. She has started taking vitamin d3 and cayenne pepper. Within an hour of taking cayenne pepper, she was able to straighten her fingers. It is working good for her. I’m going to recommend she starts vitamin E for her dryness. Lemon water is good for cleaning the kidneys. There are natural things that can help. I follow Dr. Barbara O’Neill. She is great. My husband started Ceylon cinnamon capsules for his Type 2 diabetes and gotten off metformin. His A1C is down to 6.2. He also peripheral neuropathy and started doing cayenne pepper wraps on his feet. No more pain meds and all the stabbing pain is gone. He can actually walk on his toes now thanks to Dr. Barbara. Praying you all find healing and ways to minister to your bodies. Don’t give up.
Please inform her speciality Dr of her progress. They should hear what has helped. 🤞
Dr. Barbara is a beast. She's incredible.
Watch her stomach. One day her protocol will harm her stomach like it did me. Things work… until they don’t
Thank you Dr. Yu- BRILLIANT VIDEO! I was diagnosed with Sjogrens long before most Dentists/Doctors knew what it was. I even went to be examined by many different doctors at Johns Hopkins in Baltimore, they even drew blood, did a lip biopsy, checked out my saliva, and checked out my eyes for a Sjogrens national testing. Makes me now wonder, in years past there was calcification in my left parotoid which I was told to suck lemons to resolve it, but during the study, this was the side that produced less saliva. I walked away from Johns Hopkins as inconclusive but most probably, which at the time I was not convinced.
NOW, many years ago, but now I am convinced, Sjogrens with debilitating joint/hip and knee pain with no swelling. I can barely swallow and never was able to lose weight or the horrible itchy rash until I went on a total carnivore diet and no sugar. Previously on fruits/veg/chicken/fish is all that I ate. Thank you for addressing the muscle aches and weakness, because of this I am barely mobile. WONDRFUL VIDEO! Makes me rethink my rheumatologist.
WHY is it that ONLY prednisone gives me any relief?
Prednisone is the only thing that works for me as well. I did not think my sjogrens was a big piece of my multi faceted diagnosis. No one ever really asks about it (only if my mouth is dry). Now i wonder if i need to look into it further.
I have found the carnivore diet to reduce many of the assorted sjogrens problems most notably rheumatoid ones.
Try Low Dose Naltrexone!
The steroid shot ONLY works for me also.
@slomo, OMG I was in the hospital for Tacycardia I also had lung issue which they said was bronchtis that I never had before but I have other things and came accross this anyway they had put me on prednisone and I couldnt believe how much better I felt all around, mind cleared breathing better, didnt hurt as bad could think better had more energy, if I could Id take it all the tme but they say you cant.
I've had sjogrens for about 18 years now I have most all the symptoms I'm pretty much homebound I go out only a little bit I hang in there and pray
Thank you so much for making this video! I’ve had all of these with my Sjögren’s except for kidney issues and lymphoma (thank goodness!)
My weight dropped from 130 to 105 while I was consciously taking high calorie protein shakes trying not to lose weight. My Rheumatologist said it was unreal to my Sjögren’s (which was raging at the time and incredibly painful) and my IM doctor’s response to my visit was “you’re the only woman I’ve had who is worried about weight loss.” I was sure that it was related to my Sjögren’s and they responded as if I was crazy. Needless to say, I’ve since changed doctors and with increased doses of immunosuppressants I am at a healthy weight again and the other symptoms improved as well.
I’m so grateful for your video - thanks for providing accurate education about Sjögren’s and emphasizing that it’s more than dry eyes and dry mouth!
Thank you for watching!
I have never heard a better explanation of Sjogren’s from the medical world. Thank you!! This is wonderful. On to your next video….btw I was diagnosed 5 years ago after I went into a severe flare up that my GP could no longer dismiss & ignore.
Im so glad you mentioned the early sjogren's panel test, many drs do not mention it or know of it. I went to about five rheumatologists before i found a dr that tried the early panel test. My ANA would always come back positive but my SSA and SSB would be negative for years. However, i had about 15 years of symptoms that was getting worse. Finally, the early sjogren's panel came back with several areas elevated and i was finally diagnosed in 2018.
My sinuses are also bone dry causing headaches triggering migraine
Mine too along with the ear drums being very dry and sucked in causing extreme tooth and ear pain like I’m being stabbed in the ear with a pencil!
The muscle pain, electric shocks, mental fitness decline. Thank you Doc.
Wish you were here!!!
thank you!
I've never heard anyone talk of electric shocks. I get them through my right back shoulder blade area. It zaps then it's gone. It will do it several times before it stops. I have needed two total shoulder replacements for years, but I don't know if that has anything to do w/ it. Are the electric-like shocks part of Sjogren's, too?
I’m having the same thing. I thought I was crazy but every time I go to dry my toe it feels like I’m being shocked by electricity and my joints hurts so bad. I feel like I’m losing use of my hands and that’s scary to me. Thanks. Take care ❤
It is really tearing up my mouth,bladder, fatigue,spin,eyes, reflux ,TMJ and OA. I had a nerve test on my legs and back last week. 😢😢😢 I am just getting out of the bed. I find Systane Eye gel works better for my eyes. I have spent over 30,000 on my teeth and I don't date. I haven't dated for years. I wouldn't put anyone through this hell. My lungs are starting to bother me. You need a great Neurologist.
I’m sorry your going through this I’ve been struggling with a lot of issues for months thst are similar and wasted money on different specialists my neurologist just checked mri for neck and spine and didn’t find anything wrong apart from some curvature I’m still waiting on a nerve conduction. Test and doesn’t rheumatologist check for this sjrogens?
🥺OMG. This is me. !! # DITTO.
& No 1 will listen.
Even my N.P. won't look into further.
& Rheumy. Only wants to put us on roidz !! / Plaquenil / other Rx s .. That cause way to much side effects. !! Irreversible organ' etc. Issues. 😢
IMO only I would see a rheumatologist as sjorens syndrome is an auto immune disease
Me im suffering fibromyalgia its almost Six months.. so painful 😢 im having chronic fatigue and anxiety.. 😢
I can relate and my heart breaks for you. Prayers for you for relief.
Very complete video. Please keep going teaching and sharing what you have studied. Take care and thank you🙏
I have Sjogrens, which was diagnosed with a lip biopsy. Recently, I was diagnosed with MCTD (mixed connective tissue disorder.) Could you please do a video on MCTD?
I have been diagnosed with Lupus and Rheumatoid Arthritis but feel it may be Sjogrens..I have been eating very clean and healthy but I keep getting worse. My lungs are burning, all the S symptoms.. now what? 😢
I hope you can find the answer. I’d be interested in knowing too!
You could try carnivore and take supplements. No sugar and try meditation
Have you been tested for Lyme?
Lupus sufferers often develop symptoms from other autoimmune diseases...I know. I have lupus, symptoms from Sjögren's, RA
That's where term mixed connective disease comes from.
@@tracyjohnson5023yes. I have lupus and Sjogren’s. It sucks. I’m eating mostly clean and trying to go carnivore. Working on healing the gut. Takes time, though, so try to be patient.
Im being tested - not completed but I've got at least 9 of these symptoms - soreness muscles-weakness of limbs, arms, legs- dryness etc.. Thank you doctor for this information..I'll add the info to my file for my next appointment ❤❤😊
My mouth has been sooooo dry for the last around a year. I asked my dentist to see if anything could be wrong...he said no. My mouth is so sensitive to toothpaste or anything too salty or sweet. Have had Reynaulds for years. Osteoarthritis and dry eyes & neuropathy and joint and muscle pain too.
It took over 10 years to be diagnosed with this and it’s kicking my behind. I’m so exhausted. Mentally and physically. I also have AS HLA-B27 positive.
I have A.S. as well! Hello 🤗 my prayers for your comfort 🙏🏼
Hi.
Really struggling here in Tennessee to find doctor to manage my Sjogren's.
This video so informative.
Just told on Tuesday of last week by rheumatologist that Sjogren's was just dry eye and dry mouth. Explained my other symptoms pain, abdominal issues, brain fog, dehydration-the rheumatologist told me Sjogren's does not do that.
I was being treated by a very knowledgeable doctor but unfortunately he passed away.
Any help with finding provider greatly appreciated.
Thank you so much. I have wondered for years and I just had a PA mention it to me 😢❤. I'm going to talk to my GP.
THANK YOU! I’m going to show this to my doc next week. I’m 65, born with nail-patella syndrome. 10yrs ago, I had a thyroidectomy, Graves Disease, after a thyroid storm threw me into STEMI. We had been unable to control my extreme hyperthyroidism with medications. Now? After years going between synthroid and Armour, my TSH last week was 40…at least it’s DOWN a bit. 🙄🤷🏼♀️. For some strange reason, my docs like to associate my symptoms with my NPS..And YES, I can understand some..I was a spontaneous mutation, basically have everything associated with NPS…to an extreme. NO nails, NO patella, glaucoma & osteoporosis diagnosed in my 30’s…and only 1 kidney, last GFR was 38, but it didn’t start dropping until the past 6 months. Now, for things not normally seen in NPS…Several instances of organ displacement, including my thyroid, parathyroid, former gallbladder, and many anomalies with muscular-skeletal anatomy.
As for sjogren’s: dry eyes, mouth and chronic sinusitis. Dysphagia, chronic gastritis, GERD (most GI issues may be related to 25yrs of NSAID use-I’ve had bleeding ulcers for over 20yrs now & damage to my stomach’s cardiac valve). Chronic pancreatitis with buildup of sludge in pancreatic and hepatic ducts…(no hx of ETOH or other hepatic toxins), Reynauds, Mitral valve prolapse, synovitis (NPS?) and pre-tibial myxedema they promised me would go away after my surgery..it hasn’t. Other things I’ve had diagnosed in recent years..CHF, aneurysm in basilar artery, thrombocytosis (idiopathic 🤷🏼♀️) …I know I’m missing some..it’s been a rough day. Yes, I’m a former healthcare professional. No, I haven’t seen a rheum. Why? I live in rural Pa, legally blind and don’t drive…AND, I’m on Medicare. Unless I’m near a teaching hospital; most docs up here want nothing to do with me. I’ve even been refused by docs in Scranton, the nearest city, because our Medicare transportation is so undependable. I’m currently scheduled for surgery…tentatively, for the aneurysm, in March, in Scranton. My girls are coming to make sure I get to my pre-op tests and surgery. I hate to be morose, and believe me, I have no s ideation. However..as much as I’d love to see my only grandchild come into the world, as I told my therapist (who I waited over 3 years to get an appt with..my 31yr old son passed from a similar aneurysm 3 1/2 yrs ago. He was like my twin with NPS-same expression. He also had an issue getting healthcare-he’d been in another country, and had no insurance here when he returned, supposedly for a short time, in Dec ‘19. He got stuck here. He had just received approval for his return VISA when he tested positive. About a month later, he was having back pain..our 1, slightly anomalous kidney’s, were deemed high risk for clots..no one would see him. After he passed, he not only had the aneurysm, his kidney was full of small thrombi. Yes, he also had a high platelet count), as I said, I don’t mean to be morose, but I’m a realist. I have also always had an advance directive putting quality over quantity. After my primary retired last year, a new pain mgt doc slashed my pain meds by 90%. I no longer have much “quality”, I’m in bed most of the day, switching between ice packs and my heating pad. I have no history of misuse..quite the opposite. I insisted on coming off the fent patch 10yrs ago, then insisted I come down on dosages twice. I made the mistake of being honest, showed him extra prn meds I had-from about 6 months of scripts. Last month, he said I don’t need anything. He plans on stopping the one I have next month. There is no one else willing to see me. I can’t just live the rest of my life in bed, in tears on the days I attempt to clean. And I refuse to go to a nursing home. Before he cut the meds, I had a relatively normal life..I cooked, cleaned, painted, wrote, did yoga.
Why should I fight to help myself when no docs are willing to help me?
Sorry..as I said, it’s been a rough day.
Just watched some more of your vids!! Great minds think alike 😉. I have primarily, a green, fruit & veggie diet..occasional chicken. I drink lots of smoothies and make lots of stir fry..& rice. I DO have cravings for my oatmeal or “congee” breakfasts-with fruits..and sourdough bread. When I said above that my late son spent years outside the country? He was in China, his former fiancé is an MD in both Hong Kong and Shenzhen. We’re still in touch. I take most of the supplements you suggest are anti-inflammatory. Angie has sent me tea pills..TCM, for different things which helped to various degrees. I should have also mentioned, on top of OA, diagnosed at age 16; I had a “complicated compression fx of L1-L3 at age 38, MANY other fractures since..these days, mostly stress fractures. I was diagnosed w CFS about 20yrs ago, pos ANA (clarify: I’ve had 2 pos ANAs, 1 neg), no other symp of Lupus, so 🤷🏼♀️. These days, when the pain gets really bad, I occasionally take kratom..in low doses bc of..I’ve read both pos & neg studies. My primary is NOT a fan of ANY supplements. I also have low THC/high CBD gummies, made specifically with terpenes targeted for anti-inflammation. The company is great..the 2 guys have worked in labs testing terpenes for 25yrs. Lately, I’ve been taking 1 at night..it helps, but I still wake up every 2 hours in pain..it’s not unusual for my hip, shoulder or even my knee to subluxate during sleep. My only issue w the gummies..I have to keep water or tea next to the bed…the dry mouth is horrible. If you can think of anything for my PA next week, let me know. She’s not as accepting for my self-advocacy as my now retired MD primary was..but..she’s better than my pain mgt doc.
Thanks as always Dr. Yu. YES! This video was quite informative regarding all the symptoms of Sjogrens' Syndrome and I didn't realize at the time when I was diagnosed with it along with Lupus 4 years ago that there was more to it than dry eyes and mouth. When you took a look at my labs as a virtual patient and was so bummed then about even taking Hydroxychloroquine I was in tears. But the best thing I liked about your work is you are holistic and look into more ways for healing than just taking drugs. Eating VEGAN for 4 years, and taking processed foods and sugar out of my diet has energized me so much. I can't wait to hear what solutions you may have to start with to relieve these 13 symptoms on a physical and mental level. Thanks again and stay happy! 🙂-Lin
When testing for early Sjogren’s, how many markers have to be positive?
I have several of these symptoms, and I have suspected that I might have this. Unfortunately, there are no doctors in my areas that have your expertise, and obvious passion to help people with this disease. I have pretty much been on a slow decline for the past few years after acquiring untreated Lyme disease.
My mother had Sjogren’s. I am seeing many symptoms in myself. My Primary doesn’t take it seriously. Should I Perdue it on my own?
Excellent video!
I was diagnosed recently with Sjogren’s. My main symptom was muscle weakness and after a muscle biopsy, it was determined that I have Immune Mediated Necrotizing Myopathy.
Thank you for sharing the knowledge. I learned a lot from your video. Can you go over ways to treat or prevent this disease with people who has it?
I tested negative for Sjogrens but do have POTS, hEDS, Fibromyalgia, osteoarthritis and other things. I want to be checked again. Excuse me while I go apply eye drops, again, for my dry, burning eyes.
Thank you for making this video!
I have ild with an annoying chronic cough. Over the years the scarring has worsened and i have some fibrosis. My pulmonist and the 5 diffetent rhuemotoligists i have had have always had the "it is what it is" kind of approach. I know it cannot be cured, but can it be slowed down? Can i improve my lung function and health?
I do have a dry cough, too.
I have ILD as well with Sjogrens and am on supplemental oxygen. It is rough
@@nicolletteg9927 sorry to hear that. How long did the ild progress until you needed oxygen? I hope you are doing well and taking care of yourself. It is frustrating and really wears you down. 💙
@@courtneytirak7014 ILD diagnosis came about a year or two after Sjogrens diagnosis. I think I went too long without proper treatment because the doctors didn’t know what was wrong with me. Once I got some answers I was put on 10 or 20 mg of prednisone and was doing better. I think my rheumatologist reduced it too soon, next thing I know I’m constantly coughing and hacking all the time. So much coughing I have developed a hernia, I’m short of breath and get tired quickly. Things just went downhill quickly when the dosage was reduced. That’s when I was told I had ILD.. Now I’m just praying to God to help me manage it all, watching what I eat and trying to incorporate some physical activity, take meds/vitamins etc…it’s a lot but hanging in there! I don’t know if the progression slows down but I am trying to stay positive and hope it does.
I have been waiting and watching for four years now.
Yes can you link treatment video?
Great video very informative. I’m interested in learning more about the integrative approach to treatment.
Is there a blood test or can a bx be done to diagnosis this?
I have asked questions about my daughter who has symptoms that I feel are autoimmune but her labs are negative
Doc, I'm 61 w/RA. Eating clean for two months. Still feel horrible. How much longer till I feel better??, or will I ever??
Catnivore Diet!
@renerushing2343 I'd like to be on that but sounds expensive
@@markmayer508 The weird thing is, it's actually LESS expensive, because you aren't buying a lot of other stuff-- shopping and cooking are way easier, too.
@@markmayer508 Good lord, I meant CARNIVORE. I joke around about it being Cativore because my cats are so thrilled with it. 🤣
@@renerushing2343 lol I know what you ment
I was diagnosed with SJOGRENS SYNDROME, my both forearms and fingers are pain numbness and tingling on my right hand side all the way to legs & foot. Please advise which doctor I am going to? Thank you 🙏🙏🙏
I went to John’s Hopkins for evaluation. They said it was primary Sjogrens. After many years I was diagnosed with rheumatoid arthritis.
How was your experience?? I might be going for the same reason!
It was so many years ago. She removed twenty minor salivay glands
Thanks Doc....really scared me...financially hard up and a senior citizen do not know what to do.
Bless, understand all I have is SS WHICH ISNT ENOUGH TO LIVE ON
Joaquin’s, I’m not dr or in med field. I know without a doubt…I hv Sjogren’s.. my dr poo poo’s it! I did come across an interesting video re Vitamin B6 deficiency and found this could be part of my problem, dry eyes, inflamed tongue, lips, dry mouth. While you investigate your possible SS symptoms, look into this B 6 deficiency video.
There are many videos on subject. Dr Berg is one.
Hi Dr. I have all these symptoms. For years. I've also had over 100 mouth ulcers. That come and go
What about enthesophytes on tendons related to Sjogren? This causes secondary tendonitis.
I have been suffering from chronic pain for 5 years. Last week I have been diagnosed with Sjogren, Fibromyalgie, and arthrose.😢
Me too suffering chronic pain.. i thought its side effect of the covid vaccine,, so i googled my symptoms and its like having neuralgia,, neuropathy and fibromyalgia 😢😢😢 its painful tbh..
Do you see any correlation between Sjogren's and immune problems? I have IgA deficiency and CVID. I have extreme dry eyes and mouth and dental issues as well as burning mouth, bad taste and burning tongue. What tests do you recommend for diagnosis? I literally have all of the symptoms you mentioned and yet my Rheumatologist said I don't have it. Chronic Bronchitis and Pneumonia as well.
Lung throat ears fatigue agitation. Stomach , brain.
Thank you so much for this & it was fantastic. Can you have family who have been diagnosed with Lupus but also can it cross over to sjorgen’s?.
This was eye-opening. Dx'd with RA (Hands) Sjogren's and Ehlers Danlos III. 8 joint replacements (only 1 from accident), 3 level back fusion, future 2-3 cervical fusion, dry eyes, skin, mouth and vagina, but ANA neg, muscle atrophy for no reason.Didnt realize sjogrens affected bone. They don't have the EDIII gene identified, so they can't distinguish between the two. RHEUMATOLOGIST got cancer and closed office so am hunting for a new one. Went to only other one in area 15 yrs ago wondering why so many joints going bad and she said "just OA" and acted as if not interesting enough for her. Will have to go out of area to find good one.
It is so hard to find a great or even good rheumatologist :(
thank you so much for watching!
It sure is. ❤
Thank you for thid vidio. I jave been dx with sjogrens. But have not heard of these blood studies. Thank you . I am going to ask my Rheumatologist for these test. I have do many of these symptoms
I have learned so much.
I just found your channel. Can you address Raynaud’s?
I think I need to get checked out for this, I hit just about every point.
Yea me too.
Me three
Thank you for this very informative video.
I have positive antibodies postive- I have have a post Ana and negative
I have symptoms of this on and off my entire adult life right down to dental issues early and difficulty wearing contacts. I even saw a rheumatologist a couple years ago that said I didn't need to see him - 2 years later in soooooooomuch joint and muscle pain get referred again and she right off the rip thinks sjogrens (of which I had never heard of) and tests showing positive for antibodies
Now what to do about it I still hurt way more all over than I think i should- and watching this video I'm a little upset that so many of my symptoms throughout the last 30 years are on this list.
Thank you for this information as I currently do not see a rheumatologist, but have been diagnosed with RA in 2017, psoriasis in 2019, and Sjorgens in 2021. I have many of these symptoms you spoke of so I will definitely look for a rheumatologist after the holiday. Again thank you!
Great video well explained, thank you!! I’ve been seeing my Rheumatologist but this explains it simply when at times I’ve been confused. Would like more info re the RA factor and diagnosising. Markers reveal positive but Rheumatologist says no it’s OA. I’d like to be sure.
recently tested positive ANA, negative SSA/SSB. My VA Rheumatologist said I could have positive ANA but not have autoimmune disorder. For about 10 years I’ve had joint pain in my hands that comes and goes. In cold weather I get extremely freezing hands,feet,nose AND butt 😮for a few years in the summer I was having burning feet episodes that the podiatrist couldn’t explain. Dry skin, eyes and mouth (possibly worse w/medication) My VA doctor wants to be all -let’s talk about it in 6 months….You’re the only doctor who explained the comes and goes arthritis. (Are these symptoms flare ups?) I’m hoping you can help with a comment (and you’re in Los Angeles) I just started a new turmeric, just worried like anybody else.
Oh yeah! SWOLLEN hard neck Lymph nodes for a few years. My voice now hurts/gets hoarse. After camera exam, the otolaryngologist says it’s just vocal trauma. It makes me sad to think that talking/laughing a lot could cause swollen lymph nodes… like I’m 48 and been yapping all my life. And/or could dry mouth from medicine cause swollen lymph nodes? I had them before the medication. Ooooh, I know you get lots of comments, I hope you see this.
I have all these symptoms bar reynauds (but my toes do look yellow sometimes) and the kidney involvement. My doctor agrees it’s very plausible I have Sjogren an and I am waiting to go to rheumatology. I had RA as an adolescent from 16-26ish and then it went into remission without medication. I am now 44. I have had a positive ANA in the past but usually test negative. I have had neutropenia for several years and anaemia. My arthritis was mostly seronegative and I have negative RF even now. I am worried my bloods won’t show much in terms of the necessary markers and it will be a deal breaker in terms of diagnosis
I could use more info about sero negative RA spondylosis.
Can you make a video talking about the risks if any of taking a wait and see approach if a patient presents inflammatory markers and positive for sjorgrens but no symptoms, thank you
Any advice for MCTD?
I will make this for future video
Oh I hope so. I have Meniers and it’s been rough with all the rain. I lost hearing in my right ear and my balance is so bad I got both MCTD and Meniers after a long bout of Lyme disease. With Lyme disease I couldn’t rip a piece of paper in half because of the pain. My blood work always shows Sjogren’s,Lupus and other diseases,all after the Lyme infection
Sorry for your struggles. Did the Lyme cause joint pain in your hands?
@@bg5760 I couldn’t even get dressed by myself. I couldn’t zip my jeans,or even tear a piece of paper apart.Worse than the Tin Man.Awful
@MYAutoimmuneMD , Doctor, any advise for EGPA ? ...been diagnosed recently 😢
Such a helpful video. Thank you.
Thanks for watching!
I have two friends with this condition and for one it was very difficult to get the diagnosis! The other has a family history of sjogrens!
But what do you do when doctors ignore your symptoms. I have Celiac & psoriatic arthritis. A lifetime of facial swelling and teeth removal for infections not there, burning tounge. My new dentist put my on perscription toothpaste for dry mouth said my tounge was damaged or smooth(?) Diagnosed by eye doctor with dry eye and gynecologist with vaginal dryness (very painful) extremely cracking dry skin and my Rheumatologist just tells me no I dont think so. I've had these symptoms for years and all my doctors ignore me when i bring it up. Guessing its not showing up in labs. They seem more upset i did my own research than I have theses symptoms. Im so frustrated I dont want to be THAT patient but Im so tired of fighting my body and trying to get docs to listen.
I'm that person too...no help with symptoms. Just left to it..
Big club like that here. I hear ya.
I changed Doctors more than 10 times Rikki got one that would listen to me and treat or Diagnose what’s going on
I’m having the same problems 😢
You
How do you usually treat sjogren's? I have sjogren's, antisynthetase syndrome, polymiositis, joa1 positive and reungards. I have ild and did not realize it could be from the sjogren's. Is there a separate treatment or is it usually all treated together?
They're usually tied together. Ill be making her videos on these topics. Thanks for commenting!
@@MYAutoimmuneMD thank you!
I have Ra for 40 yrs. I have Sjogrens and it flared up so bad when I started going thru menopause.. I'm bedridden and miserable. In so much neuropathy pain and heaviness. Can't sit in my wheelchair long. Thank you so much....
Found cbd oil drops and a carnivore diet helped but have never become as disabled as you report.
Thank you! Best video!
Could you please do a video on treatments for Sjogrens that actually work. I have Sjogrens, ILD, derma and polymyositis, I am on prednisone and it seems to work better than the other prescribed medication I am on. My rheumatologist has reduced the dosage from 10mg to 5mg. 5 doesn’t really do much of anything, but ten keeps me feeling as close to normal as possible. Prednisone and a Tylenol really seems to help. I’m looking for natural remedies that are better for you.
Carnivore diet. I've been carnivore for almost 5 years. Only had one flare up. Caused by carrageenan in heavy cream. I can sleep without ointment and haven't used eye drops in all this time.
Good information , recently diagnosed with SS,MCTD ,IBS eye to stomach muscles weekness reflux and indigestion problem Dr started steroids 20mg to now reduce 5mg , can explain how to come out from MCTD
I have ALL the symptoms of Sjögrens INCLUDING Lymphoma in the form of CLL. But no doctor will acknowledge a positive diagnosis of Sjögrens. What the hell!
Same
Are u taking methotrexate? Hope they are atleast treating the cll
@@monkeybearmaxNegative
@@rcjward go to diff doctors
Thanks for this information.
Glad it was helpful!
Ive had it 5 years and no one will help me because of neg blood test. My health is going 😮down hill. This is horrible.
❤ thank you
Can this be caused by Psoriasis/PsA? I feel like I have all 3,although no weight loss :(
What if I havevall the symptoms, but not positive blood work?
Excellent information, easily understood...I have sarcoidosis..another mysterious disfunction...thank you
You are very welcome
Thank you!
I have all that now and need pain meds. But they dont give em to you. Hard tome swollowing w/o water.
Do you have a list of drs you can suggest here in San Antonio. I’ve been trying to get my internist to pay attention but she’s doesn’t! I need help!
Great video=Thank you doctor!!!!!
You are welcome!
I do meet some of these criteria but have not lab tested positive. I did have the lip biopsy but had the rare reaction of numbness with the lip. Not enough samples were taken. Based on findings, felt important to repeat according to Johns Hopkins. I never did as was out-of-pocket procedure plus numbness lasted for years.
Any one with headaches? I have lupus and I think I’ve developed Sjorgren’s also. But the headaches are debilitating. I don’t know who can help. Migraine meds don’t.
@@cindylou1108 before I was diagnosed with Sjogrens I think about two years prior I used to get debilitating cluster headaches. I went and saw a neurologist, try to go when you are in the thick of the headache if possible. I don’t know if there’s a correlation between the two, but I wish I knew back then to ask more questions. I really hope that you get relief and feeling better soon.
I would like to know how high should the Vitamin d Ievel be?
and what about missing/Broken vitamin D receptors? can't the blod level be high, but the cells cant absorb it? So your cells are missing it even though your blood levels are fine😮
Excellent video!
Thank you so much!
How to differentiate between Lupus Erythematosus and Rheumatoid in diagnostic lab tests
Will work on this in a future video! Thanks!
Thank you so much! Recent dx of Sjögrens after yrs of increasing symptoms.
Thanks for watching!
Ive got Sjogrens and have had 2 biopsies for lymphoma
THANK YOU SO MUCH FOR YOUR KNOWLEDGE....FINALLY THIS AUTOIMMUNE DISEASE IS BEING ADDRESSED...I HAVE SUFFERED FOR YEARS...MY ANA WAS 6:40...
you're welcome!
Thank you❤…..
What is the presence in labs that are whacked ???
In other words how is it definitively dx ???
Sjogren's has made me lost 3 pregnancies at every 16 wks plus. My rheumatologist never manged me well. Just had miscarriage in feb 14, 2024. Its keeps attacking the heart of the fetus 💔. I was given prednisone 10mg to take, which didn't work. Does it mean that, patients with Sjogren can't carry baby to term or near term?
Oh how tragic! I hope an answer can be found for you.
Oh, so sorry. I hope you had understanding and live6 to help you through heartbreak.
I did as well. Lost many, but a couple i. 2nd trimester. I was able to carry 2 to 37 weeks, but high risk, on bed rest with both at 27 weeks, in labor. One on terbutaline. NO family support made tougher.
+ANA over 35 years. So tired sometimes literally can't get body to move. Recent GI dr on intro visit sent me to acupuncture bc thought lymph nodes blocked.
No diagnosis. But drs been sending me for all different cancers screens.
I wish you were my dr. I am so sick.
I have not been officially diagnosed yet. They think i have lupus and Sjogren disease.
Can either cause your body to swell all over?
how to find a rhumatologists that is willing to learn about it, identify it and help patients . ???
There are very few docs that can diagnose this. I'm a medical professional and it's very disturbing to be ignored.
I have SLE and Sjogrens disease as well, along with secondary Raynaud's syndrome. Apart from eye drops and artificial saliva, which is about as much use as a chocolate fireguard, i get no other help or information from my rheumatologist at all. The dry mouth and eyes are unbearable and cause significant issues. I wish i had more support and information from my rheumatologist. Than you for your video. It helps.
My rheumatologist put me on methotrexate
@@joycehazeltine7016 is it helping?
Research Amanita Muscaria microdosing. I do this and it has completely relieved my dry mouth. I take a moistened fingertip, dip it into the powder and take that small amount every 3rd night. I found this out accidentally while trying to relieve the fatigue.
I went to a dry eye specialist, Dr. Zucker in Santa Barbara. 1,000 mg of black currant oil, 1,000 mg flax seed oil and 3,000 mg of fish oil a day helps.
Regener eyes pro drops, warm compress on eyes for a few minutes once a day and then gently massage your eyelids.
As if it couldn't get any worse.
I'd like to know if taking medications, supplements or eating certain foods even water causes unrelenting worsening burning mouth, dry mouth, stomach pain, nausea is this really possible or just me😢
Have you tried oil pulling in your mouth?
Raw organic coconut oil gives moisture, gets rid of bacteria in the gums and mouth. I take a teaspoon of the oil and let it melt , next, swish it all over inside your mouth, including your gums and teeth. I do this 5 to 10 minutes THEN SPIT IT ALL OUT IN A TRASH BIN. Don't ever swallow the dirty used oil, its carrying all the bacteria that you just pulled out.
My mouth. Teeth and throat feel clean and moist.
Hopefully this information gets applied by you and everyone reading it😅 oh and the oil pulling has quickly removed dental pain.🤞👍🫦🦷
How can I test if I have Sjögren?
thank you!!
You're welcome!
I am 54 and when was 25 diagnosed for rheumatoid arthritis but after 6 years told me that it is primary Sjogren disease. Now I have pulmonary problems, heart disease, irritable bowel, pain , fibromyalgia, my head is like a Moon and constant dry eyes and mouth and nose, have rush at legs and neck... can I just wait for lymphoma?
Thank you.
Research the Carnivore diet. What have you got to lose?
Could you please tell me good specialists in pittsburgh, Pennsylvania that deal with sjogrens.
So many symptoms so few answers