Sjogren's Syndrome: Beyond Dry Eyes and Mouth by Frederick Vivino, MD
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- Опубліковано 18 чер 2024
- Grand Round presentation at University Hospitals Cleveland Medical Center and Case Western Reserve University School of Medicine Department of Medicine on Sjorgen's syndrome by Frederick Vivino, MD
Many diagnosed with chronic fatigue syndrome are now being diagnosed as having Sjögren’s. It’s not only dry eyes and mouth. It can start in the central nervous system
Thank you very much Doctor, for the your* most intelligent * helpful information seen & shared, *your valued notes of how the symptoms are correlated to each,& recomendations & treatments, were eye* opening, to the major causes & issues, = So helpful to us all suffering with this delima, Bless you x Keep up the good works, to help us & to update & inform other Doctors who *lag,,to keep up ,,x cause *setbacks to patients, Amen You Answered my Prayers x Gave more infos vs other *Docs to Patients. patients
It was my dentist who referred me to an ENT after I c/o severe dry mouth for a couple of years and a lump in my lower palate of what felt like an enlarged salivary duct or node. Here I sit reading everything I can while recovering from my inner lip biopsy 2 days ago. The more I become educated the more I realize I have had it for many many years but since childhood.
Me too! I think back to my great-grandmother and believes that she also had it. I have been using low-dose Naltrexone with good results for my autoimmune diseases which includes Sjogren's.
I was told i had sjorjens 20 years ago
I have Sjogren's Syndrome. This is THE most misdiagnosed disease out there to date!
Exactly both misdiagnosed and undiagnosed. It took me 42 yrs to get my diagnosis. My symptoms began around 10 years old, not long after puberty started in 1970. I was diagnosed at 52 yrs old. This should NOT be happening. Now my cartilage is gone in both knees and hips. My first knee replacement is February 11th (the left) soon following complete recovery and physical therapy (8 wks), I will be able to have right knee replaced. One hip at a time will be replaced later in the year. My 59th birthday is this early Spring.
If I had been diagnosed years earlier, I would have been started on my current regimen of Plaquenil to slow down the autoimmune disease, and quite possibly be going through these necessary replacement surgeries later in life and not at my young age. Sjogens in children? Yes younger children!
I agree! My stupid doctor said I had allergies and was giving me Flonase, which was drying me up! It’s horrific!
@@reason5591 I also had symptoms in my teens, and was diagnosed with a tic (because I was blinking) and an eye infection.
@@Tinyteacher1111 I am still trying to get diagnosed, I have had every symptom for years now; things have got worse my teeth are decaying , I have seen specialists in neck and head ! Scans, ultra sounds mri swallowing barium solution! I can only eat soft food my swallowing is a problem , I regurgitate food losing weight, inflammation of the entire head dryness of entire body had the eye test ! Need to see a rumotologist fast ! Very hard for doctors to diagnose x
I had to ask for the test specifically with a list of my family history of autoimmune conditions and list of symptoms after like 3 thyroid tests. I asked if it also tested Sjogren's (he did the test for rheumatoid arthritis) and was told yes but it wouldn't be that... Guess what Primary Sjogren's with systemic symptoms (lungs, digestive, arthritis (non rheumatoid) fatigue etc.)
This is a great video‼We have a clinic that treats Sjogren's Syndrome naturally prior to glandular damage. I hope we can all continue to help the large majority of Sjogren's patients that are suffering.
MD Anderson is the place to be.
@@txlivin7819 - Definitely a great hospital for cancer, but one of several great places to be.
Thank you for this excellent video. I wish every doctor could see this. They really need it.
Not sponsored but a tip, Neutrogena hydroboost body gel cream is amazing at helping dry skin feel like normal skin again. Try it out, it surprised me how dried out I was and how little regular skin creams help.
I'm 25, been in and out of doctors and the er for over 3 months. Started with extreme fatigue that I still have, dry eyes, dry mouth is the worst, now i have a slight cough and twinges in my throat, feels harder to swallow, joint pain now, teeth and gum issues, I just feel weak and like a shell of the person I was. I also developed Visual Snow Syndrome at the same exact time so I thoughts that's all it was, until the people in my VS group although they have dry eyes dont have dry mouth....I went to the dentist last week and she said call your doctor and ask them to test you for Sjogrens. I am tired of being told this is all in my head. Thabk you for the information, this has been so terrifying.
Severe fatigue was the worst symptom for me too. That's how I knew something just wasn't right. Then I started having all kinds of other really weird symptoms - joint pain, my feet were freezing cold all the time, and I had problems concentrating and my short term memory was awful. (I would forget names of places, and lose my train of thought right in the middle of a conversation!) But the problem is that I don't fit any of the "statistics" - I'm a younger MALE. So doctors at first didn't even think I had an autoimmune disease, and kept trying to say it was "stress" or "anxiety." I was finally diagnosed in 2014, I was only in my early 30's. This stupid disease has affected my entire life :/
I will tell you one thing. I was diagnosed with this terrible illness too. Here is one big fix that saved my life. I discovered that bacteria grows in the gums causing a spread of parasites inside your body. These parasites are killing you. So buy a waterpik the best you can afford and start cleaning your gums!!! Everytime you touch food you will pray your gums. Rinse your mouth with salt water after each meal too! Use cold water only. Floss everytime you eat. Don’t go to bed before doing any one this. Shew on lemon to start salivating again! And let me know in two weeks how good you start to feel! This shit hides in our gums!
@@Data_-xw7yw This is one huge treatment! I have perfectly clean teeth and she couldn’t even get any plaque on my teeth for 10 minutes until she dug deep in my gums, but I had parasites! I’ve been treating it with irrigation of different types and brushing with structured silver, etc.
@@Tinyteacher1111 what test determined you had parasite? And what type ir irrigation are you using? Are you feeling better?
@@Data_-xw7yw where did you get this info about the gums?
I sincerely appreciate the content and the insight. I wish this lecturer would travel the countryside, to each state, and educate the Rhematologists in local practices.... because I had one helluva time trying to figure out what was wrong with me. My symptoms are "classic", yet could not be diagnosed. I was told many times that there was nothing wrong with me. It was not until we got to the protein-level blood assessments that a diagnosis was made, as I was not SSA/SSB or RF positive. I beg you-- Please, please make medical school students understand this stuff!
I agree with your comment. I went to a local ENT doctor because of a very sore parotid gland. I told him about my positive anti-SSA test. He said, "Why are you telling me about your immune system tests? I'm an ENT doctor." I explained that I think I have Sjogren's and he looked embarrassed. He said, "Suck on lemon drops and put a heating pad on it." This is what we deal with!
the ignorance and arrogance is unbounded ... !
@@LoveFlatfootin1 I love when they tell you to chew sugarless gum with xylitol in it!!! I had to have a colonoscopy within one month of starting sugarless gum. I have never recovered from it. Wiped out the good bacteria in my intestines. That was 8 years ago. Probably had Sjogren's then. Eye doc was no help either. She just told me to use eye drops. Never suspected Sjogren's.
@@nancymuller3291 Wow, thank you for sharing that. I didn't know!
@@LoveFlatfootin1 omg!!!
thank you so much
I also had the strangest symptoms! Sweaty toes, watery eyes at first because your eyes are trying to compensate, and an extreme sense of smell!
My organs started failing after I was diagnosed by a ophthalmologist and then my rheumatologist. Every report showed enlarged lymph nodes! I also almost died on the table during the 4th operation to have my saline breast implants removed. That was a huge relief on my body because they were filled with toxins! I still have it, but toxins of any kind can take a toll on your body. I also had just moved to a pristine looking condo which had mold and backed to a marsh! NEVER move on a slope!!!
Excellent lecture. I am a SS patient and OD. Thank you for sharing this most important discussion, Casey Hogan OD, FAAO, FSLS,
went to ophthalmologists, optometrist, and a rheumatologist going on two years with symptoms . neither schiermers test nor vital eye stain was performed by any of them . not even a check on the glands. just prescription drops, and pills . 😢 so, I am taking omega 3, cod liver oil, and OTC eye drops . and dry heat mask 2 x da
My primary doctor said I had Brusitus. I had an up coming appointment with my eye doctor who has treated me for dry eyes for the past 2 years and when he over heard me telling his nurse that my joints were killing me and I was so tired he sent me to a rhematologists straight away. She ran different blood work and sure enough it came back positive for Sjogrens. At least I know what's going on. Will continue to see the rhematologists every few months and hope this goes into remission. Good video, good information
mary alessandra8)3
Hi Mary
How are you.
What do you take for your dry eyes. What medication you take for fatigue& muscle pains. I am having severe dry eyes and experiencing fatigue and simular situations
@@rreddy4640 hope ur an Indian like me... me too have similar conditions from very childhood but never understood until two days ago where my salivary gland swelling or parotid gland swelling forced me to google and believe me ... totally feel destructed on knowing about all those symptoms that I have been suffering for years since childhood . Brother fatigueness , body pain, red eye , soar throat , dry mouth , joint pain, lower back pain , prostratits , shortness of breath , depression and anxiety .... the list goes on .. and now planning to see a doctor even know the fact that there is no cure for any auto immune disorder ... god is cruel to us ... bro can you please tell about ur current status like your symptoms and did you seen any doctor ? Started any medicine... like stuff
ياريت كانت مترجمة بالعربية لمن لديه القدرة لانها مفيدة جداً جزاكم الله خيراً ❤️👍🏻
Thanks 🖒🖒🖒
never been officially diagnosed, but i had all the symptoms of sjogrens. i am feeling much better after 6 months of switching to a keto diet and cutting out sugar high fructose corn syrup. i have lost 40 pounds also. im also jogging 4 miles daily. hope this helps someone.
Skinny people with sjorgens probably wont benefit from keto diet - they often need a high carb low protein to gain and maintain. What I'm saying is everyones body is different and reacts to diets differently.
@serfinusa9532 - I am afraid that a ketogenic diet is the fad du jour. People on a so-called 'keto diet' do not even follow a real Ketogenic diet unless forced to by an extreme condition like uncontrolled seizures. Weight loss and exercise is personally good for you, though, so congratulations on that.
@@MossyMozart keto is not a fad, it was has been going since 1930 and has been so helpful to people suffering epilepsy and MS, they are not forced into "keto" they choose between changing their way of eating for health or some very strong medications with all their side effects! I know what I would choose.
I was diagnosed with Gjorgrens in 2010. In 2013, I had Lympoma of my left Paradid gland. I needed 17 radiation treatments. In 2018, I got Lympoma again on my right Paratid gland and only needed 2 radiation treatments. It seems like I get cancer every 6 years. I'm due.
My teeth are another issue. I've had 2 root canals that failed. I tried using those dics that stick to your gums, and I think they caused my root canal fails.
I do get skeleton pain all over my body and my hand swells now and then.
I use Restasis for my eyes. Now, with having new drug coverage, I have to pay $192 for a 60-day supply for the generic.
I'm just a mess, and I'm turning 73 soon. .
Just had CABG quad surgery a month ago. Cardiologists refused to recognize the connection between Sjogren's and heart disease.
Specialists are only concerned with their specialty organ or system. My dad was very ill and each one just treated him according to their specialty. They were killing him as one diagnosis dominoed to another. The various treatments were impacting each other. So I had to sit them all down and tell them to work together or I was having him medevaced ( I actually said I was going to burn the place down if they did not get their S together - emotional time). Such egos. They finally worked together a bit but it was too late. He died and I brought two of them to the medical board.
@janlascko - According to this video lecture, the heart is the only organ NOT effected.
excellent video. Like the others, wished it would pop up first in a search. I live in the Cleveland area. I've been diagnosed with Sjogrens in 2009. I also have a benign pituitary adenoma (surgery done but it has returned), I had a heart attack 4 years ago. I get nearly all of my primary care at the Cleveland Wade Park VA hospital and NO ONE is connecting the dots with the Sjogrens. Recently, I'm now developing tremors and at times difficulty in walking/balancing. I've already connected that Sjogrens can turn Neuro on you. Is there someone at Case Western I can contact for a better understanding? Like your video says, I have insurance besides the VA
You hit the nail on the head - NO ONE is connecting the dots!!!
All doctors said it is not cureable but to see so many videos on nose breathing i try it and 100percent successful
Hello and thank you
I was with sjodgrens about 10 yrs ago. Also with ra. When my rheumatologist retired 😖. I have no one. My sjodgrens sp. sorry.
Can I show three positive readings on Early sjogren's panel,yet have negative ana borderline rheumatoid yet not have Sjogrens?
I had punctal plugs put in my eyes 30 years before I was diagnosed.
The problem is, I never told my opthalmologist about my joint pain,, or my constant problems with my teeth.
I had Sjogrens for decades before I was diagnosed by a dentist.
The only reason he suggested that I had Sjogrens was he was a Donated Dental doctor and they forward your medical records. When he saw joint pain and fatigue, he then explained Sjogrens to me.
JuneBug
Hi ,what medication are you using for dry eyes and fatigue. I am having sjogrens for years.
QQQ. Could having tzken radio active iodine for goiter have caused the Sjogren,'s by effecting the salivary glands first?
Have this shit. Had Thyroid cancer, then hell broke loose in my body after my Thyroidectomy (took Thyroid out) and especially after the Radiation treatment . I had Lupus Symptoms, and then Fibromyalgia, I was ANA positive and got diagnosed with Fibro and Sjorgrens.. after 3 years, meaning 2019, I started to feel so good no pains, nothing, then like magic I started feeling sick again, got tested 3 weeks ago and got negative for Fibro and negative ANA..how ever I still got diagnosed with Sjorgrens it is I guess then. Just sick of feeling sick.
How do you test negative after testing positive?????
My Hope for you is in the coming year that you have the right tx. hell even to be cured🙏. One thing with this autoimmune diseases they stopped for a while and then out of nowhere...Whamo
One thing I could suggest is a really really good rheumatologist who's familiar with lupus fibromyalgia arthritis all that crap. You going to go through a lot of changes but at least if you have a good rheumatologist she'll get to know you know what you're going through and hopefully you won't have to suffer so much. Best of luck to you don't give in just hang in there.
@@christinalopez6564 I tested positive for ANA .. (antinuclear antibody) then after 2 yrs of crap I tested negative to a lot of stuff including the ANA. RIGHT NOW I AM JUST DEALING WITH SJORGRENS SYNDROME WHICH WAS DIAGNOSED BACK THEN AS WELL AS A SECONDARY ILLNESS ...🤦🏻♀️🙈 HAPPY NEW YEAR!!
@@foreverfree5249 Happy New Year!!
Blessings to you for a
Healty Prosperous
Happy New Year!!
Your not alone girl..
daeling with the 💩
all my life .
Thank you for Well wishes....
Stay Strong
🙏 you have more good days than bad.
(SMILE)
What treatments have worked? Would like to hear testimonies. A lot of treatments you mentioned sound superficial or not treating the underlining issues? Just a thought...
@myralhf - As the video pointed out, patients can present with a number of different scenarios, so anecdotes are worthless.
Living life to the fullest option was all I ever wanted thank you dr gboya for making that come through he gave me hope when I was lost all thanks to him 😊☺️.
Why does pilocarpine take so long to work? Can't it be made in an as needed form?
I was diagnosed with Sjogrens two years ago but it was so low, I wonder if I have it all, I do have dry stinging eyes at night, mouth a little dry but it goes away after I get up and moving.
I do have a lot of muscle skeletal pain, could be it’s getting more intense, I don’t know.
Yes this is very typical
I'm 65, was just diagnosed this week but believe I have had it for decades. I was officially diagnosed with Dry Eye when I was 27. I have felt so lousy through the years, couldn't get anyone to help. Was diagnosed with Fibro in 1999. Finally, I recently ordered an arthritis panel and found I have an ANA of 1:1280.
Glad to hear you're in the care of a rheumatologist that's the bottom line. You may have to go through a few to find someone who will listen to you needs and treats you best of luck to you in 2021 also know that you are not alone.
SAme result of ANA..
I wonder why I have elevated liver enzyme.. so I do all the laboratory test to roll out what is the possible cause
Sunday I will have liver biopsy
My doctor told me I have auto immune desease..
But now i conclude maybe I have sjogren syndrome.. coz I have no severe dry eyes
Burning sensation
@mommy2kitty - I had 2 negative ANAs in 2021 & early 2023. Now, as of November, I have a level of 2.62 (0.0 - 1.0). How does that compare? However, I have negative Rheumatoid Factor, Anti-SSA/RO and Anti-SSA/La. So I don't know what to think.
I use menthol like Vicks, near NOT in my eyes to make them water. Or Castor oil on the eyelashes.
Tears are not what you lack it is the oils from myobial glands. You are making it worse
Am curious if anyone else has a continual salty taste in the mouth with Sjogren's? It changes the taste of my food, ugh, and I have very little appetite as well.
Same here no appetite difficulty swallowing weight loss
Yes! Currently dealing with that now! So frustrating! I talked to my dentist and he believes this is just another symptom of SS. But the last time the test (4 months ago) showed negative on the SSa and SSb
@LilyRoseChannel01 - I have a very bitter taste in my mouth for years now, which got my primary NP to look for Sjogren's Syndrome. It is quite awful. I have a number of overlapping symptoms with SS, but not all the labs were positive, only ANA and Thyroid Peroxidase. Impatiently waiting for my appointment with a supposedly well-known immunologist who also deals with autoimmune diseases. She also studies B cells and T cells, too, both of which are abnormally low in me. Fingers crossed!
@@brendapouncey6475 Me too. Always testing negative but some marker shows up that they can't find the source for!
@@MossyMozart I can understand. Such a frustrating process to find out what's going on. My labs were sent to some big lab in CA, which should have been conclusive. Still said negative but something shows up. My rheumatologist gets annoyed every time my reg doc sends me there Bec she says she can't find anything. How messy is this?
Being great full to Dr osaye from all time till all time I hope you find what your heart desires just as you have put a smile on many of our faces with just your hands and herbal’s
More grace to you work doctor thanks so much for the medication,it did fight the (Els) and nailed it..
Dont see a Doctor see a opthamologists....Think Herpes could be a cause as well
hi .. why do you think Herpes could be a cause??????????????
Ha! I have seen 6 ophthalmologists in the last 10 years, not one of them mentioned Sjogren's. There is also retina problems that they nice saw until I could not see out of my left eye. Finally, I saw a retina specialist. Now I am wondering about my brother, he died of lymphoma in his fifties.
,@@cocochanel1029, I have never had Herpes so I seriously doubt the Herpes theories. or Hepatitis. But I do have Hashimoto's and have had it for many years.
Yes. There is research indicating this is caused by one or more viral infections. This is why plaquenil works for many, it is an anti-viral.
I get heartburn
anyone done lip biopsy...how is the experience?
@hioyas - I am guessing that it not as bad as a spinal tap or bone marrow biopsy, both of which I have endured. >_< I guess that it feels like a cut inside your lip.
Wished translated in Arabic 👍🏻❤️
If your salivary glands are not producing enough then you cant spare any for the test.
I need answers eyes so dry can't open mucus crust
Nose dry
Mouth when waking
Skin seb derm Rosacea like
Cold hands feet
Fatigue
Sleep issues
Lip biopsy negative
Eye test shows no tears
Ana speckled
Igg4 elevated
Driving me insane nothing helps
Eye plugs
Restasis
Drops gels
No gluten wheat dairy for a year
Fish oil
Black currant seed
Hi, I recognize myself in your symptoms. I was thinking to try pilocarpine (tablets) for my dry eyes. Do you have found a solution yet? :)
have you been checked for lupus
My symptoms also
Gabapentin helps
I have dry mouth but my eyes are fine..... I need a cure plz help.
Are u not listening to the video???
@spirituallyconscious7774 - Re-watch the video. Have you seen a rheumatologist?
Koi treatment ho sakta hai please please please please please please please tell me
How are you now
@@sonalisingh8462 hey hope we r few Indians in this comment box having this damn disease .. If you r sjorgen.. did you start any treatment and if so how you now and pls tell about the medicines you took
I have all the symptoms of sjogren' s ( dry eyes no tears, no saliva, dry throat, aching painful joints, numbness in hands & feet, fatigue, frequent urination ( am not diabetic ) Am feeling horrible & have severe GERD ...
Exercise for fatigue? What about post exertional malaise?
Use apple cider vinegar prepare it in home... It will help
It helps for?
@@alatsaf - I use it for laundry to fight odors. ^_^