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.
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!
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 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.
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? 😢
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 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.
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 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.
@@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 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?
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.
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 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.
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 primary Sjögren’s and have severe dry mouth and rarely dry eyes. My eyes are usually really weepy so I always look like i am stoned or drunk. Have so many other worse things happening that the rheumatology nurses say isn’t Sjögren’s but they won’t test me for other things. I’ve given up. I feel like I’m destined to be miserable until I die. Diet changes and vitamins haven’t helped.
You might need other doctors for your other issues. I just finally had my lip biopsy but I have Adrenal Insufficiency , Hashimoto's and hypothyroidism since 8yrs old. I see a rheumatologist, endocrinologist and my primary. Just try again, you might find some relief.
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.
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 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 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.
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!
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
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..
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
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?
My stupid Neurologist keeps treating me for migraine! I keep telling him I have Neural Sjogrens which attacks the brain and Spinal column.Neurologist are few and far between in my area.My PCP's knowledge of Sjogrens is "it causes dry eyes and dry mouth"! She gets offended if I try to tell her what Sjogrens really is and how bad it is!!
I’ve had many tests notjinh concluded.. I have severe calcium deposits hands fingers arms . I’ve been to a rheumatologist and she said well I have no idea let’s call it o a . Have you seen anything like this ? I do have dry eyes and dry skin .
I wish you could be my doctor. I am in the middle of getting my results on sjogrens. For sure i have ra. But if i show negative ill be in shocked because i have every single thing you mentioned except for the dry eyes and dry mouth i think my mouth is dry sometimes because im not hydrated enough. But i wake in the mornings feeling like someone punched me in my throat and it lingers all day and when i swallow sometimes it hurts a lot and then oddly seems to be messing with my ears is that something that can happen? Almost like an ear infection but it's not in the ears its like in the throat almost but hurts to swallow saliva & especially food & to talk too long & I'm a talker but my nose seems to be stuffy at times and then during the day my nose just drips a lot on one side... But everything else muscle weakness pain everywhere not just my joints the breathing issues my heart has fluid around it weight loss my nerves muscles spasms coughing I'm anemic. I feel like you would make a great doctor that will listen to everything. The one i currently have he listens but then when he hears what hes looking for he changes the subject instead of letting me explain it. Like my nose thing he wouldnt let me explain what it does i dont know if my nose is dry or not...
is there ANYTHING with clean diet to reduce symptoms? we are almost NO CARB, NO SUGAR. NO PROcSSED. next step os ORGANIC BEEF, CHICKEN AND organic veggies . I figure it can't make things worse😮😮
I have ms, raynauds,anxiety and diabetes. I'm seeing a musklo skeletal Dr and my blood tests are back. That's why I'm watching this. Dry eyes, dry mouth, choking lits of things I thought was ms. ASD so sjorens makes sense.
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!
I have all these symptons started researching after my aunt passed and she had been diagonosed with sjogrens. My mother passed 10 years earlier from non hodgkins lymphoma so does this disease run in the family?
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.
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
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.
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....
This sounds strangely like long Lyme & co-infections and long covid. Kidney issues addressed through acupuncture helps some. GP doc is not fond of making referrals. Nor of believing this isn’t all “anxiety.”
,Sir, i am from india. I have no cost to pay you for my treatment. But im in a big problem.. Can you plz help me.. From my 16 year, i have a problem of swollen knee with pain. It goes and come back after diagnosis. I have negetive RA, negetive Anti ccp and negetive ANA ! No one can answer it ! Doctors are confused. But i have 7.35 CRP .. I am tired. Want to kill myself.. I am poor.. Please can i guide me.. What is wrong about my body !
I've heard of knee and other joint pain, swelling, burning problems from patients who became infected by tuberculosis. The bacteria could lie dorment until it spreads out into the rest of the body. With high CRP, perhaps give it a shot.
After decades of severe dry mouth (dr told me a side effect of meds), dry cough, dry eye (eye dr put plugs in tear ducts), I have suffered but just dealt with it. In the last year and a half, I have developed intermittent neuropathy in the hands and feet, inflammation all over my body, night sweats, severe fatigue, and headaches. After multiple PCPS, endocrinologist, allergist, scans, I was finally sent to a rheumatologist. I tested positive for Sjogrens. She told me not to worry about it and did not bother to schedule a follow-up. I am absolutely miserable and can't get any medical professional to help me. How do I get help???
Thank you so much. I have Sjogrens and Fibromyalgia. . I’m in a flareup and I’m out of dry mouth gum. Its caused allot of tooth decay because of it. You did such an informational vide. I learned more from you than my own Rheumatologist
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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.
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!
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.
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.
Can you please talk about osteoarthritis 💐thanks
Very complete video. Please keep going teaching and sharing what you have studied. Take care and thank you🙏
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?
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!
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.
So many symptoms so few answers
When testing for early Sjogren’s, how many markers have to be positive?
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 😢
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?
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 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.
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 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
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 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.
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 🙏🏼
I have primary Sjögren’s and have severe dry mouth and rarely dry eyes. My eyes are usually really weepy so I always look like i am stoned or drunk. Have so many other worse things happening that the rheumatology nurses say isn’t Sjögren’s but they won’t test me for other things. I’ve given up. I feel like I’m destined to be miserable until I die. Diet changes and vitamins haven’t helped.
Weepy eyes are dry eyes.. trying to compensate.
@@afriendalongtheway6342 thank you ❤️
You might need other doctors for your other issues. I just finally had my lip biopsy but I have Adrenal Insufficiency , Hashimoto's and hypothyroidism since 8yrs old. I see a rheumatologist, endocrinologist and my primary. Just try again, you might find some relief.
Excellent information, easily understood...I have sarcoidosis..another mysterious disfunction...thank you
You are very welcome
I have been waiting and watching for four years now.
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.
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 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 🙏🙏🙏
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?.
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.
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!
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
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.
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..
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
Ive got Sjogrens and have had 2 biopsies for lymphoma
Thank you! Best video!
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!
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!
It is so hard to find a great or even good rheumatologist :(
thank you so much for watching!
I think I need to get checked out for this, I hit just about every point.
Yea me too.
Me three
My stupid Neurologist keeps treating me for migraine! I keep telling him I have Neural Sjogrens which attacks the brain and Spinal column.Neurologist are few and far between in my area.My PCP's knowledge of Sjogrens is "it causes dry eyes and dry mouth"! She gets offended if I try to tell her what Sjogrens really is and how bad it is!!
The muscle pain, electric shocks, mental fitness decline. Thank you Doc.
Wish you were here!!!
thank you!
I’ve had many tests notjinh concluded.. I have severe calcium deposits hands fingers arms . I’ve been to a rheumatologist and she said well I have no idea let’s call it o a .
Have you seen anything like this ?
I do have dry eyes and dry skin .
Same here.. doc refuses to acknowledge my symptoms.
I wish you could be my doctor. I am in the middle of getting my results on sjogrens. For sure i have ra. But if i show negative ill be in shocked because i have every single thing you mentioned except for the dry eyes and dry mouth i think my mouth is dry sometimes because im not hydrated enough. But i wake in the mornings feeling like someone punched me in my throat and it lingers all day and when i swallow sometimes it hurts a lot and then oddly seems to be messing with my ears is that something that can happen? Almost like an ear infection but it's not in the ears its like in the throat almost but hurts to swallow saliva & especially food & to talk too long & I'm a talker but my nose seems to be stuffy at times and then during the day my nose just drips a lot on one side... But everything else muscle weakness pain everywhere not just my joints the breathing issues my heart has fluid around it weight loss my nerves muscles spasms coughing I'm anemic. I feel like you would make a great doctor that will listen to everything. The one i currently have he listens but then when he hears what hes looking for he changes the subject instead of letting me explain it. Like my nose thing he wouldnt let me explain what it does i dont know if my nose is dry or not...
Can it cause hemochromatosis ?
is there ANYTHING with clean diet to reduce symptoms? we are almost NO CARB, NO SUGAR. NO PROcSSED. next step os ORGANIC BEEF, CHICKEN AND organic veggies . I figure it can't make things worse😮😮
I have ms, raynauds,anxiety and diabetes. I'm seeing a musklo skeletal Dr and my blood tests are back. That's why I'm watching this. Dry eyes, dry mouth, choking lits of things I thought was ms. ASD so sjorens makes sense.
GO GLUTEN FREE AND LOW CARB -it works miracles
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!
I have all these symptons started researching after my aunt passed and she had been diagonosed with sjogrens. My mother passed 10 years earlier from non hodgkins lymphoma so does this disease run in the family?
Yes
@@conniemitchell1939 are you a doctor too?
@@DPA373 This is not me; even though it states my nick name: wrong; Connie
No
Yes, my sister has Lupus, mother had polymyositis and Hodgkins I have symptoms of Sjogrens but doc is a newbie and not helpful.
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.
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 very informative. I’m interested in learning more about the integrative approach to treatment.
Great video=Thank you doctor!!!!!
You are welcome!
Could you please tell me good specialists in pittsburgh, Pennsylvania that deal with sjogrens.
How to differentiate between Lupus Erythematosus and Rheumatoid in diagnostic lab tests
Will work on this in a future video! Thanks!
Thanks for this information.
Glad it was helpful!
How can I test if I have Sjögren?
Yes can you link treatment video?
THANK YOU!
You're welcome!
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 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.
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.
This sounds strangely like long Lyme & co-infections and long covid. Kidney issues addressed through acupuncture helps some.
GP doc is not fond of making referrals. Nor of believing this isn’t all “anxiety.”
Then find a new dr.
Thanks for this. Have you done the neuro Sjogrens video yet? Looking forward to that one.
Yes I have! Here is the link to the video ruclips.net/video/uakfUxORonc/видео.html
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.
Excellent video!
Thank you so much!
Lyme’s Disease
Very interesting
Thanks for watching!
Can’t see where to subscribe? This was great! Thank you
Thank you so much!
,Sir, i am from india. I have no cost to pay you for my treatment. But im in a big problem.. Can you plz help me.. From my 16 year, i have a problem of swollen knee with pain. It goes and come back after diagnosis. I have negetive RA, negetive Anti ccp and negetive ANA ! No one can answer it ! Doctors are confused. But i have 7.35 CRP .. I am tired. Want to kill myself.. I am poor.. Please can i guide me.. What is wrong about my body !
Try chlorophyll. You need knee anthroscopy.
I've heard of knee and other joint pain, swelling, burning problems from patients who became infected by tuberculosis. The bacteria could lie dorment until it spreads out into the rest of the body. With high CRP, perhaps give it a shot.
Try consume turmeric
Find food allergies. Change your diet.
Thank you!
You're welcome!
Thank u
Welcome
After decades of severe dry mouth (dr told me a side effect of meds), dry cough, dry eye (eye dr put plugs in tear ducts), I have suffered but just dealt with it. In the last year and a half, I have developed intermittent neuropathy in the hands and feet, inflammation all over my body, night sweats, severe fatigue, and headaches. After multiple PCPS, endocrinologist, allergist, scans, I was finally sent to a rheumatologist. I tested positive for Sjogrens. She told me not to worry about it and did not bother to schedule a follow-up. I am absolutely miserable and can't get any medical professional to help me. How do I get help???
Why is he talking like that?
You’ve scared everyone with general information.
Dry mouth?… tape your mouth shut at night
Thanks, doc.
I use zylimelts at night. Helps a lot.
Thank you so much. I have Sjogrens and Fibromyalgia. . I’m in a flareup and I’m out of dry mouth gum. Its caused allot of tooth decay because of it. You did such an informational vide. I learned more from you than my own Rheumatologist
You are so welcome
Thank you! Everything changed for me in the last year and a half but can’t even get an appointment with rheumatologist in my area 🥲
Save yourself the trouble. I waited 8 months to see doc and she blew off my symptoms and offered no treatment.