My daughter 37 yrs old, Was diagnosed 18 yrs ago. I am hearing symptoms that could be related to the sjogrens. Symptoms she has had for years. She is seeing a neurologist for migraine headaches. Pain doctor, psychiatrist for depression & anxiety, rheumatologist for SS, eye doctor for dry eye. It seems band aids are being applied without treating the SS. Thank you for sharing this info.
Bună ziua! Am sindrom sjogren primar. Medicația mea este: Plachenil Prednison Aspacardin Aspenter Piascledin Diurex Metropronol Lacrimi artificiale systone Gel lacrivisc Vigantolete 1000 Ma i pot lua si omega3, vitamina C ? Mulțumesc!
It's wonderful to hear someone acknowledgeing all the aspects of SS. It's disheartening to be dismissed by others who believe SS is only dry mouth and eyes. One feels unfairly labelled as either a hyperchondriac or as having mental illness for just trying to get some relief. Families don't understand as they are told it is nothing. So we endure trying to find our own answers in the absence of any medical compassion, advice or meaningful interventions. Thank you.
Yup I hear you. I was diagnosed with sjorvrens in 2021. I knew that there was something wrong with me about 1 year before that. My doctor said that there was no need to get blood work done and put me on antibiotics for something else. I had a fistula and was diagnosed with diverticulitis at the same time. I ended up with a colostomy bag and couldn't get my stoma area to heal. Constant infections and pain. I started seeing an ostamy nurse explained to her what I was going through she told me to go to my doctor and get tested. That is when the blood work confirmed what I had. I suffered for over a year with mouth sores,itchy skin pimple pop outs and the fact that I couldn't eat, sleep or go to the bathroom because of some kind of pain or canker sores. Now I am seeing a rheumatologist for the pain but I still have breakouts frequently because of stress and other factors. Don't ever let anyone tell you that it's all in your head because it's not... No one knows what you are going through unless they have been there before. Thx for letting me vent 😌
@@nancykorczynski5653 I have that too, my dr. Wants to do biopsy and prescribe me a drugs, but I refuse . I do a lot of research and what I did I do natural all organics . In my dry mouth I use biotene oral mouth .rinse , eye drops systene gel . I detox my body , with ginger , pinch of blck pepper , 1 table spoon of cocunot oil, 2tsbp of lemon , cinnamon and I feel good . Take good care of your hygiene . Put a lot of moisturizer on your skin . Avoid , sugary , and processed food , eat a lot of fruits and veggies and be active and of course pray to our Almighty God Jesus to heal your body . Don’t depends on medication . Just lived your life w/things all natural and you will be find. And every morning , just drink warm water all the time . More on water , because water is good for your body . Right now , I detox my body to get rid all my toxins for 1 week and good things I can still work . My body is fine and I believe in self healing . Don’t take care of your pain , do something natural and you will be fine . I hope this things can help you . God bless you ❤️
Thank you for this information. I have had Sjogren's for decades, and some symptoms are getting worse as I get older. At times, I have felt like I was going crazy and that I would never feel "good" again. No one wants to hear about your complaints. It's lonely.
Sandra Leigh, you are so right. It is sad having Sjögren’s and other auto immune disorders and chronic illnesses. Friends and family, even if they love you or are well intentioned- simply do not understand. Most doctors treat you like you are crazy, and god forbid if you’re overweight! Then ALL of your symptoms will be blamed on obesity, even if it’s not true.
@@lucretiamaggio6154 Also on perimenopause or menopause, if you are a woman. I had a partial hysterectomy with one ovary removed and from 30 on, early menopausal symptoms were always blamed without any labs drawn to check hormone levels.
I was just diagnosed one month ago. It's a double edged sword. I now have answers to many issues. HOWEVER, I NOW HAVE ANSWERS TO MANY ISSUES. Yes, you get tired (no pun) about all of it. I'm a senior and it's just alot.
So many Drs need to watch this video. I get so tired of hearing ER Dr, and other specialists say to me once they read my records that I have sjogren's and that's "oh you get dry mouth and eyes." Many Drs believe that's it. So frustrating especially when you're sick and seeking help.
Well put together, informative and perfect pacing. I was diagnosed with Sjogren's over 20 years ago and learned more about this disorder in 13 minutes than in all those years.
I agree 100%! I have a wonderful neurologist, but this was so informative. I was diagnosed in 2014. I already had multiple sclerosis which I was diagnosed with in 2002. Its been rough. Any chronic illness is, but being informed is so important! Good luck to you! 😊
Thank you. You've explained so much. My Mom had it and I knew very little at the time about it. I thought it was just having a dry mouth and nobody else talked about this disease. Recently she passed from liver disease so it is serious indeed. She suffered a great deal during her lifetime but seldom complained. She was a gem and I miss her.
I am so sorry your mom suffered and that you lost her. It is such a shame that so many of our Doctors don’t know about these things that are complicated. Especially the Rheumatologists. I have told my dr about my eyes that are dry itchy crusty in the morning and asked about Sjogrens he says oh yes probably! But after seeing this video I am bet these other symptoms i have are going undiagnosed. I also have Lupus. Again, I am so very sorry about your blessed Mom 😢💔
People wouldnt have believed her neways i had oesteeoroporisis and artritis at 27 and 54other health issues so deeply normalized in our society YOU ARE HERBIVORE FRUGIVORE STOP EATING POISON WFPB DOCTORS AND BROOKE GOLDNER
Thank you for posting this. My mother had 'severe' Sjogren's. Misdiagnosed initially as asthma, it lost her her job and complications from it ultimately killed her. It is, so far as I know, the least known of the auto-immune syndromes. It's great to see a Doctor sharing the symptoms with the wider public. My heart goes out to any sufferers as I know how debilitating this, and its oftentimes concomitant conditions, can be. Stay strong and tell your GP / any doctor, ALL of your symptoms, even if you think they're unrelated. ❤
Most regular medical people are ignorant where autoimmune diseases are concerned. They are especially ignorant of Sjogren's and Primary Sjogren's Disease.
Well, this video does help, l have sent, and was designed when l was about 40 years old I am now 60. It's been a hard road, l had to give up a job l loved. The worst thing l did was complain about consultant l saw when l was about 45. After that l haven't had the right help that l should. I do suffer daily and it's a hard life, when you are constantly ill. I have lost a lot of friends, because they have no time for an ill person. SS is horrible 😢 l need much more help, but it's so hard to get it , from doctors and friends 😢
My Grandmother had this disease in 1954, Drs from all over the World came to study her. She allowed many painful tests to help them understand. She also had Amaloydosis, (wrong spelling) very little was known about these diseases. She died very young, but I am proud that she was able to help. I miss her every day… she was a beautiful brave flower in the garden of life.
Watch OUT for dry mouth!!! It will ruin YOUR TEETH! I ignored it for years and despite good care, I am now fighting to keep my remaining teeth. Please do NOT ignore this symptom! I watched this for the info on dry mouth just for my own info as I do NOT have Sjogren's:)
I know, I lost all my teeth despite always having brushed like mad - twice or three times a day for 30 to 60 minutes!!! Dentists don't know that Sjorgrens, and Celiac which I also got, can damage teeth. Each time I tried to mention that, I got laughed out the office and made out to be the dumb patient!!!
So true. I tried Biotene, but it contains Xylotol which causes my Interstitial Cystitis to flare up and then I ends up with a horrible UTI. I've always got a bottle of water.
I was diagnosed with Sjogren's about 25 yrs ago. My symptoms manifested after pregnancy (I was only 18 then) & deteriorated after each subsequent pregnancy. The Drs I deal with dismiss it as cosmetic & nothing but a mild inconvenience. The reality is that my life was devastated by it; constant pain, joint swelling & arthritis, sublixating joints, weakness, fatigue, dry mouth to point of choking when eating, losing teeth because of damage from dry mouth, chest pain, breathing issues etc, etc. I was virtually bed bound for years & it still takes monumental willpower just to get up each morning because of the pain I suffer. I've met absolutely no health professional here who recognise it as a serious condition & have been made to feel like a neurotic hypochondriac for most of my life. I was so encouraged to watch your video & actually see a Dr that recognised this as a legitimate serious condition that can be utterly devastating. Thank you for the information.
I am newly diagnosed, turned out i was misdiagnosed for years and all it required was a blood test. Well, and a new rheumatologist. This was very helpful, I think there's a huge lack of understanding about how complex and serious SS is, even among medical professionals.
@@yvonnekneeshaw2784 I can't remember the name of it, but it's rapid something something and according to my doc, who's also an instructor at a med school, not many docs order it.
Thank you for this informative video. I find my experience Sjogrens is hard because it’s not well known. Unlike rheumatoid arthritis or lupus or even MS, Sjogrens falls under the radar a a lot of times. It’s wonderful to see a doctor explain it so clearly and concisely! Thank you
I am new on the road of Sjogrens and lots of other autoimmune issues. Diagnosed 6 years ago after a lifetime of being told, you are getting older, this in my 30's. You are too heavy, lose weight, it will solve your problems. I lost 75 pounds, most through illnesses, some through diet, exercise. It did not solve all of the problems. Finally, I went on vacation and came home, 4 days later my sister came for a 2 week stay. Needless to say, I was exhausted. My Parotid glands swelled like walnuts. Went to a younger doctor in my clinic, who is also an Internal Medicine doctor. She took one look, and started the massive amounts of testing they finally did. I found a delightful Rheumatologist that did most of the confirmation of Sjogrens. I have a great Pulmonologist, Opthomologist, Dermatologist, Rheumatologist and a few others that keep me going and listen. I don't know what the future holds, but am a guinea pig for all testing, some new meds, studies and a y way I can further the knowledge of Sjogrens to the world. The Sjogren's Foundation is a wealth of info, great support, and a way to see new treatments, beneficial products geared towards Sjogrens sufferers. Take back as much control of your life as you can, live each day as it comes. Everyday we get closer to solutions to our issues. Thank you for your understanding and time. Good luck and best wishes to any that are still reading this.
@user-qw5nx2ol8o I have had lip biopsy, Shirmer's testing for eyes, countless blood workup for RA, lympmedema, lung function testing every 3 months. So many other things I can't list, too long. It was and is brutal for diagnosis and maintenance.
Im a doctor in practice and was taking consultations from my headache and blurred vision, diagnosed with meningitis and Intracranial hypertension put on treatment in 2015. Before that I was taking medicine for Trigeminal Neuralgia, pain radiating to my eye since 2010. Even before that I was diagnosed with degenerative spine with radiculitis (PIVD) in 2006 . Hypothyroidism 2003 on treatment Eltroxin 100 mcg daily. In 2019 I suffered joint pain knee I consulted Orthopaedician since my mother have RA, I ask dr. To rule out autoimmune diseases as my mother hv RA. dr. sent RA factor which was negative. In 2020 shortness of breath and falling oxygen levels HRCT chest confirmed obliterative bronchiolitis &Interstitial lung disease. In Oct.2021, dr. Did so much of CSF tapping, to reduce ICP and diagnose the condition but only to label it Idiopathic IH. In 2022, I observed dry mouth but I thought Dimox which I was taking 5-6 gms per day for intracranial hypertension is causing dry mouth. Meanwhile I observed my parotid enlarging continuously. I visited ENT deptt but in vain. My condition deteriorated coz of fatigue muscle pain and my altered senses and profound memory loss. Mini mental score less than 23. And severe vasculitis lesions over limbs and abdomen. I was not able to walk, think and discontinued work completely. I sent serology for Sjogrens syndrome SSA, SSB and ANA , thinking of exclusion both came positive . & ANA 4+ My doctors were not able to diagnose this disease And years later I myself diagnose my illness. So wide spora of complications Sjogren syndrome can have. In spite of consulting high end specialist for neuro, ophthalmology ENT and chest specialist no one abled to pin point it. Confirmed by biopsy in 2022 since then on HCQS 400mg ,MMF 2g but condition is not very much improved. I was surprised to know specialists miss the diagnosis badly.
My mom passed away last November, she had all the symptoms (except the lymphoma). Never diagnosed with SS, her doctor hasn't done much for her sadly enough. I am glad her suffering is over but I miss her very much. I just wish she had a good doctor like you are. Thank you for the information.
I was diagnosed with Sjogren's in 1986. There are people who actually have told me I'm faking it. It is painful and a daily challenge. I also have diabetes which exacerbates so many of these symptoms. It's real and never ends. I wish more people were educated on this syndrome.
I'm sorry to hear that you have experienced people questioning the validity of your Sjogren's diagnosis. It is unfortunate that some individuals may not understand the complexities and severity of autoimmune diseases like Sjogren's. Living with Sjogren's can be a challenging and painful experience, and it is important for others to recognize and acknowledge the reality of your symptoms. It is crucial for individuals with chronic conditions like Sjogren's to receive support and understanding from their loved ones and communities. It is also important to raise awareness about Sjogren's syndrome and other autoimmune diseases so that more people can understand the impact these conditions can have on individuals' lives. Educating others about Sjogren's and its symptoms can help to promote empathy, understanding, and support for those who are affected by this condition. I hope that you continue to receive the support and care that you need to manage your Sjogren's symptoms and other health conditions. Please know that you are not alone, and that there are resources available to help you cope with the challenges of living with a chronic illness.
My son was diagnosed at 15 for this. They retested him 5 times because they said it was impossible for a young male to have it. To this day most doctors brush him and his medical problems off.
Many of these symptoms can also be a result of an unstable upper neck with high intracranial pressure due to poor drainage from the lower brain. This results in pressure on the cranial nerves, and lower brain. After my neck injury I developed severe dry mouth - especially when lying on my back. I could roll to my right side and feel the saliva flowing better. Appreciate that an unstable sacrum affects the neck. Women have wider, more unstable pelvises. I have had most of these symptoms ( and high inflammatory markers) all from an unstable sacrum and upper neck. This is an important video ! Thank you.
This is a conclusion I have come to also… because although I have tested positive for ANA with nucleolar pattern… I also had an X-ray that showed straightening of cervical spine. When I was describing the pressure in my head and behind my eyes… the X-ray tech was confused about where to point the X-ray and told me it sounds like encephalitis and I should get a lumbar puncture. That made me start looking into intracranial pressure. I realized my neck has been a problem I’ve just lived with for years… no pillow works, driving headrests are torture and I pull them off or put them on backwards. Once I started paying attention to my neck, it has helped the pressure in my eyes and the dryness is ever so slightly less dry than before. It makes me think I’m on the right track. I also think I’m putting strain on my vagus nerve and it’s messing up my digestive system and has given me SIBO.
How are you feeling now? I’ve not heard about this before and have been navigating the healthcare system for two years after testing positive ANA but ENA panel is negative so they won’t diagnose me but the dryness is out of control and the lip biopsy confirmed chronic inflammation. I don’t have serology markers for SS other than a positive ANA. It is very frustrating because I have a lot of these stamina after two bad Covid infections. Could have triggered this autoimmune response.
I think it's amazing how many SS patients and their loved ones have never been exposed to this information! It looks like we all need to share these videos with our own rheumatologist so that we have a chance of a normal life.
Thank you for mentioning fibromyalgia. I have often wondered if I have been misdiagnosed with fibromyalgia. You have just told me more than my doctor has told me in the last 15 years.
THANKS FROM SERBIA.FOR ME YOURS EDUCATIONAL LECTURES MEANS A LOT BECAUSE MY FAMILY DOES NOT TAKE ME SERIOUSLY AND I STRUGGLE FROM MY 25 .NOW I AM 53 AND CAN BEARLI FUNCTION.SO,AGAINE THANK YOU FOR TAKING TIME AND DO THIS .WISH YOU ALL THE BEST DOCTOR.
Thanks for creating this great video. I will definitely be sharing it. I was diagnosed with Fibromyalgia and Sjogrens in 2019. Since then, Rheumatoid/Osteo Arthritis and Lupus have been added to the list. I do have degenerative changes already in my hips, feet, fingers and shoulders from the RA. I experience a lot of the symptoms you have mentioned. My Rheumatologist is knowledgeable with the disease but it was joining a support group on Facebook that really helped me understand it better and more importantly, know that I wasn't alone. With Sjogrens, it doesn't just stop with a couple symptoms. It's always something new and new diseases showing up. It's never just "if" more develops, it's when and what. I dread my springtime blood work and x-rays because every time there is something new to be added. It is hard for a lot of people (and some Doctors) to understand that this disease is way more than just the dryness. The dryness is definitely a big thing though. I wake up with my mouth and throat so dry that I can taste blood from my very sore throat. My biggest symptoms aside from the dryness is moderate to severe joint and muscle pains along with frequent headaches and migraines. I think we "Sjogies" sometimes find that it's hard for others to accept what they don't understand and to do our best to teach them. That seems to be one of the biggest complaints is that family, friends and Doctors don't understand it and it leaves the person feeling alone, ashamed, useless and a burden. More Sjogrens awareness needs to be shared.
Amen absolutely cause me and my closest son and the first argument we've ever had just have no way to understand shortly after he had three different medical incidents that left him very sick for awhile he immediately apologized and said mama if you ever feel this way for just one day I'm so sorry❤
@@chrishingson3064 Sadly, I think that's the only way for others to understand is to experience a bit of it. I hope everything is good now for you all.
Thank you so much for this video. I have this and have a few doctors say "Oh you have Sjorgren's" like it's no big deal and not a single one of them has really educated me on it and what to expect. I learned more in your 12:52 video then I've been told by my doctors. There's so much out there on the internet it's hard to know what's real and what's speculation.
It is really frustrating that I have been suffering from these symptoms and they were overlooked/I was gaslighted by doctors. I have been managing all these symptoms for almost a decade. I was only diagnosed after a neck ultrasound which I pushed for after almost a year of throat/esophageal infections. I am also diagnosed with Ankylosing Spondylitis.
I can't afford it any longer, but I use to get acupuncture frequently along with Chinese herbs. If you can do it, I would look for a Chinese doctor to give you treatments. It put symptoms in remission for a long long time.
Thank you! There have been some tough changes going on with me. Diagnosed in 2010, things are changing. I appreciate your forthrightness and understanding of what some people have thought is just “in my head”. Tell that to my mouth-having lost all my teeth. Now, multiple things have shown up that need to be addressed-especially about the heart. Heart skipping beats for three months now. Calling Monday to see about a monitor. I refuse to give in to the depression! I LOVE life-even with such a diagnosis.
Same here..I love life even if it seems so frustrating at times. I have Sjogrens, POTS, long covid , heart issues and TMJ . Now knee n shoulder giving up..what a ride
I want to thank you for a very well done informative discussion on this subject. Not only did you cover the symptoms, but the testing and other topics no one else has - including my doctors!!! You are amazing! Thank you again!
@@rheumatologistoncall oh, THAT’S the first thing I did, subscribe! You are so informative! And boy I am FAMOUS for my “sharing”! 😂I gladly tell people things that I think can help them. Already told my daughter about you👍🏼🤗♥️
I too was diagnosed with Sjogrens positive test just about 2 years back. Many of the symptoms also mocked symptoms hypothyroidism present and so before that positive ex, the thyroid was blamed for a lot of the symptoms. My now older sibs had a diagnosis many years before I even knew what it was..,they had the means to go to Mayo’s for the testing. They never mentioned anything about Sjogrens to me so I wasn’t mocking or aping their symptoms. One day, in our old age,they told me that I likely had it too because I’d had the same symptoms they had known about for many years. It took some doing but I finally convinced my integrative MD that I had it ..enough times so that more definitive tests were used by that time and I did indeed have a positive for Sjogrens from the lab. Now I understand there’s actually a med treatment for Sjogrens but I’d bet none of us will be able to get it because it’s currently on the forbidden list due to people trying to use it legitimately for Covid..and that is.,Hydroxychloroquin. I have yet to ask my Dr. about its use but I have some symptoms that have been on me since October of 2022 and nothing actually stops the debilitating bouts of weakness,,inner tremors, depression and the coming and going of mouth or eye or throat dryness. The MD has changed my thyroid meds 3 different times over the last 6 years and can’t find the reason why my TSH levels are so out of balance…so I received a dx of hypothyroidism. But different supps have seemed to help stop the tremors for a time and then it’s like heaven on earth.,no tremors, nor weakness and trembling outwardly, and strength like I had 20 years ago. Thank you Dr.. for this video that ties..it..all together.
My husband has been struggling with Sjogren’s for just ever. We think he developed his first symptoms in his early 20s, but no diagnosis until he was in his 50s. He’s in his 70s now, and it can get really bad sometimes. Chronic pain, sometimes severe, numbness and weakness, head pain, general fatigue. He can’t drive any more because of lack of feeling in his feet. It’s a nasty disease, similar to my dad’s rheumatoid arthritis.
I'm sorry to hear that your husband has been struggling with Sjogren's for so long. It's a challenging condition to manage, and it can have a significant impact on a person's quality of life. I appreciate you sharing your experience with the condition, as it helps to raise awareness and understanding of Sjogren's and its impact on individuals and families.
I appreciate this information. I was diagnosed over 6 years ago by a rheumatologist but he did nothing about it and didn’t give me any information except a one page piece of literature. I have since told every doctor I have ever had about it and they just look at me. I have yet to have a doctor address it. Any information I have gathered has been on my own. Most doctors see that I go to a pain clinic for my arthritis and fibromyalgia and they just don’t want to deal with me. There is such a stigma about pain management medication that it seems every doctor thinks I am after pain medication. They couldn’t be more wrong. It’s so frustrating. I appreciate your video and the information you provided .
Thank you for your comment. Exactly very informative video. I too suffer from pain and diagnosed as Rheumatoid Arthritis. You are exactly correct doctors are afraid refilling or prescribing pain meds. So glad I'm with a new Hematologist; however, blood work returned as having SS. I thought it was a Swedish name when first saw it. Hope you 🎉heal today.
Thank you so much for this information .... I was diagnosed with sjorgrens in 1998 ...before that I thought I had mumps when my glands got so swollen! When the diagnosis was confirmed by a physician he even kept photos of the swelling to keep for his own reference books! I have been hospitalized twice when I was totally unable to walk and have since realized what is happening instead of panicking when I have bad symptoms. I went through a period of choking for no apparent reason , unable to breath ...my husband did the hymlich maneuver which got the air into my lungs again....very scary ! I am now 68 years old living a happy active life when I am able to and relaxing and trying not to be stressed when I am not well. Strangely enough , I have found that carrot and apple smoothies and sleep aid a quick recovery from a day in pain ( I don't like smoothies usually!) I share these experiences in the hope that it will help others. I am So pleased to see that you are putting information like this on utube as I have struggled through many years when most medical professionals didn't even know about sjorgrens. Fortunately I have a GP who was willing to seek out information sothat he could understand the diagnosis better. Thank you 😊
Finally someone is talking about this. I’ve had it for years now before I even figured it out. The first time I’ve heard anyone really talk about it. It’s very hard to live with so many symptoms besides all my other health issues. When I tell (even doctors offices) I have to spell it. Noone seems to interested in hearing about all my symptoms,they just blow me off like I don’t know what I’m talking about. I finally asked my PC dr. who do I see and I will be going to a rheumatologist. I hear there isn’t anything that can be done except treat your symptoms. I hope this get added to the list of diseases that certainly needs much more information and studies on even though it to late for me. Thanks for listening and for putting the information out there!
Thank you for all of this wonderful information! I've had Sjogrens for 30 plus years and no one has explained the symptoms, tests, and possible complications this well.
Diane Bondus.. Reply Because those who you went to did not know themselves... Do not make medical People into God's There is only ond God..who knows all is all and can do more than we ask or think. Ephesians 5:20 KJV TRUST IN JESUS. YAHSHUA JESUS IS THE DIVINE PHYSICIAN RIMANS 10:13 All who call upon the Lord will be saved.
Thank you Dr. for sharing this video. I have been diagnosed with Sjögren's, and I have been suffering from dry eyes/mouth, depression, digestive issues, anaemia, brain fog and spinal problems that have caused me to have to quit my job. (I worked in a hotel in laundry/housekeeping, and the spinal damage has made it impossible to continue.) At age 48 I am unable to work and am trying to get disability...this truly is a devistating disease, and I sympathise with all of you whose lives have been destroyed by this terrible disorder. Hoping this video will help bring attention to a disease that is so often overlooked or downplayed as not being serious.
As a young boy,(12 yrs old), I continually would suffer from “swollen glands” that the very much resembled the mumps. In my mid twenties I started getting out of chairs like a stiff old man. I worked hard and just figured everyone felt like this and I just needed to suck it up. I was finally diagnosed with sjogren and SFN in my early 50s. I look normal but feel like hell! Mad respect for anyone suffering with this!
Thank you doctor. I have been educating myself on Shogren's . I am a bit tired of mostly vague labels, like "undifferentiated autoimmune connective tissue disease ". Your video is very clear, it addresses many of my symptoms. I'm going to watch your video on food.
Thank you! As a newly diagnosed patient with SS, I can see that I have probably had this for a while. So much of what I've tried to tell my doctors for years has been pushed off to my being a breast cancer survivor, and the treatments I had to undergo for that. But even before that, I have had half my face tingle, dryness of mouth and eyes, difficulty swallowing, dry skin, muscle and joint pain. Stomach issues, heart palpitations... All it took was a caring NP to run a test that came back abnormal to set the ball rolling. My grandma had rheumatoid arthritis, as well as other autoimmune issues, and I have cousins on both sides as well with lupus. I'm glad I mentioned that and kept pushing for answers! Now we try to find something to alleviate the symptoms so I can live a halfway normal life.
I’m glad that you managed to get a diagnosis after so long. Could you tell us what the test was that came back abnormal please? It may be helpful for others trying to get a diagnosis. Many thanks.
So much wonderful knowledge in 12 mins. Thank you!!! I’ve had sjogrens and rheumatoid arthritis for 10 years and this video cleared up five years of misinformation. 🙏🏽
So nice of you to say that! Thank you 🙏🏻! Please share with others as this is such a common situation when patients do not understand or are not explained well. Watch my other videos, more will come
I finally got diagnosed in 2018 with Sjogrens. Dryness In eyes Dryness in mouth Dryness in vagina Stomach issues/gastric issues Pain in hand/feet Body pain Swelling in face Weakness Sinus issues, dryness with cough- hoarse voice My hips hurt, steps bother me I’m constantly told I need antidepressants and decided that I’m not going to go that route. I also have neurological issues that are dismissed I have had nerve conduction tests done and dismissed saying that I am fine. Micro hemorrhage found in urine and had bladder scope being told everything is fine. I believe my kidneys are being affected. Sun can cause outbreaks and I was told it could be related to something with my blood. Thank you for your channel. I’m going to follow your channel! I am currently working with a rheumatologist from UW Madison ❤.
My aunt was diagnosed with Sjogren's Syndrome and later developed Non-Hodgkin's Lymphoma. She died in 1994 at 42 years old. I know that my mom was tested for Sjogren's around the time my aunt died because she had some of the symptoms, but it came back negative. After watching this video, I think she might need to be checked again.
I’m so sorry for your loss. I have a wonderful rheumatologist who checks my SED rate regularly because of the propensity for Sjogren’s patients to develop lymphoma. This disease is so much more serious than people think and I’m very very sorry that you lost your aunt to this disease at such a young age.
A big thank you here. I learned a lot! My cousin has SS, and she's also had cancer three times. Now, I'm thinking about the symptoms and realize that I have quite a few of the ones you mentioned. Autoimmune problems run in the family, and I'm going to talk to my doctor about SS.
And it can be hereditary. My grandmother, mother, myself, and my daughter, all have SS, and my mother did eventually develop Non-Hodgkin's lymphoma. But, thankfully, she had an excellent oncologist & has been cancer free for 7 years.
I was diagnosed with sjogrens in 2005. It explained a lot of problems i was having as a kid and doctors never thought to test for it. I have skin issues, tons of pain everywhere, have lost all my teeth and continue to have swelling issues. I have had so many surgeries because of sjogrens complications. Recently had a stent placed in my in my LAD because it was clogged 95% and never knew. I was so close to a heart attack or stroke. Depression is a big issue since i can't work or do many things because of the pain. A lot of people don't understand and i have been called a hypochondriac many times. Getting disability was so hard because my disease is not physically seen. Thank God i found an amazing doctor in my area that fights for me all the time. Thank you for your videos.❤
This is my first time seeing this and I was diagnosed with Sjogren's back in December of 2019 and I have now have most of all of those 10 signs of Sjogren's and I never even heard of it before except when I had gotten diagnosed with it
I have multiple sclerosis and sjogrens syndrome. I was diagnosed with the two almost 20 years apart. MS right after my first son was born and then SS in 2014. This was so wonderfully put together and informative. Thank you so much. I have a wonderful neurologist, but I think he waits for me to bring my symptoms to him as to not overwhelm me sometimes. Especially where the two diseases can have similar symptoms. This definitely had quite a few ah ha moments for me! 😊
I'm glad to hear that you found the information in the video helpful and informative. It can be difficult to manage multiple chronic conditions like MS and Sjogren's Syndrome, but having a good understanding of your symptoms and how they relate to each condition can help you manage your health more effectively. It's great that you have a supportive and understanding neurologist. It's not uncommon for doctors to wait for patients to bring up their symptoms, as they don't want to overwhelm patients with unnecessary tests or treatments. However, if you feel that your symptoms are not being adequately addressed, it's important to speak up and let your doctor know. You are the best advocate for your own health, and your doctor should be willing to listen to your concerns and work with you to find the best course of action. Remember to keep track of your symptoms and any changes in your condition, and bring them up with your doctor at your next appointment. And don't be afraid to ask questions or seek out additional resources to help you manage your health.
I have rematoide arthritis and 9of the 10 symptoms you,ve just listed thought I was going crazy thank you so much . Now the challenge is getting somebody to listen and believe me
THANK YOU. I HAD LYMPHOMA 14 YRS. AGO....I HAVE SEVERE STOMACH PROBLEMS NOW. IT IS GOOD TO FIND YOUR CHANNEL AND NO SOMEONE IS OUT THERE FOR US. MY MOTHER ALSO HAD IT..
Thank you so much, Dr Girnita, for this excellent presentation! I was diagnosed as having SS back in the 1980s - actually adding to an already-extensive list of autoimmune conditions that I suffer from. You have really broadened my knowledge of this disease, and how many systems of the body can be affected! Thanks again!
Oh my goodness, you just described my entire autoimmune journey. SS was the first of many autoimmune diseases I was diagnosed with. I had no idea that there were so many other symptoms that I’ve suffered with for a long time. I have SS, fibromyalgia, Psoriatic Arthritis, ulcerative colitis, end stage Hashimoto’s disease & Pemphigus Vulgaris. I was also born with a Primary Immune deficiency disorder in the IgG subclasses. THANK YOU so much for sharing your knowledge & for validating all of us here. Bless you!
@jo6554 - If you are still here, what is your immune deficiency called? I have IG variations - low IGG2, low IGA2, and near absent IGM. There are other low counts, too. The immunologist tells me that my symptoms do not yet correspond to a known condition. For some years now, I have had a very unpleasant bitter taste in my mouth that effects the flavors of what I eat. If I eat anything that is already bitter, the taste is greatly magnified, so I avoid some foods. Does this go along with Sjogren's? Various medicos have made suggestions that have not yet helped. (I had rheumatic fever as a child, another autoimmune disease.)
Thank you very much! I learned alot. Most of all I really appreciated the way you spoke at a slower pace, which made it easier to grasp all the information. Currently, I have Hashimotos disease and probably should go see a Rheumatologist. I do have about 4 or 5 of the symptoms that you went over regarding Sjogrens. So, thank you for sharing your knowledge with us!
I was diagnosed in '94 with FMS. In 2003 with Sjogren's syndrome. I got lacrimal tear duct plugs that very day. I was told my corneas looked like mountain ranges. I had already been observed to have optic nerve swelling before then. I have had issues with asthmatic bronchitis since I was a teen, and was a beautiful singer until about 5 years ago. Lymph glands in my neck have been swollen forever. I lose my voice frequently. And have the sensation of needing to cough for years. My maternal grapa died of hodgkin's disease in his 50's. Mom had kidney problems. Osteoporosis claimed my grama from a fall that broke her pelvis, and complications took her. Mom broke her hip at 67 and 2 weeks after surgery, her kidneys failed due to high levels of antibiotics needed for infection at the surgical al sight. I am almost 60. Worried. I have Degenerative disc disease and wear a brace half the time or more. Shoulders hurt now too. Quite tired of fighting to feel good as nothing really works. Learning to accept pain and discomfort is something you do as you get older. It is ridiculous to think I may not be able to breathe the older I get.
You have described several of my symptoms which I had not put together with my previously diagnosed Sjögren's syndrome. This is helpful in managing symptoms, and life, so thank you 🙏🏻
Can someone with SS have their teeth start breaking and falling out? I’ve been thinking it was my Breast Cancer that destroyed my teeth. I have such a dry mouth that it’s hard to speak. My dry mouth wakes me up. I have 5 broken teeth currently. I don’t have Dental Insurance and I can’t afford food so Dental isn’t an option. I’m in excruciating pain from my teeth. I’d never heard of SS until very recently. I fit so many of these symptoms, a Conversation with my Doctor is an absolute must! Thank you for this information and channel! I’m very appreciative 😊
I already had Graves disease so when I started researching dry mouth and dry eyes and found out it could be another autoimmune disease, I knew I had Sjogren's. The blood tests came back negative which is not that uncommon. My doctor didn't believe me until I went to an eye doctor and had a Schirmer test done. If your doctor doesn't believe you, either make a very compelling argument or find another doctor. Hope everyone gets the help they need.
I know this video is a year old but I’ve been diagnosed with Hashimotos, RA, Sjogrens, mixed connective tissue and Addison’s Disease. Why aren’t doctors as clear as you?!! I’ve had Sjogrens since 2015 and this is the most education I’ve had on it since then!! Thank you!!! 🙏🏻
I have many of those symptoms along with other issues and was born sickly. I was born into an abusive junk food family. Drs never helped. I finally stopped with the drs after the last one almost killed me and had absolutely no remorse Long story short, suffice it to say after many years of research now I take thyroid supplements, changed my diet, grow most of my own food, moved from Minnesota to Arizona,dryer higher elevation has helped and I have my rife machine and now at 66 I feel better than I ever have. I also am very electrical and chemical sensitive, so have moved off grid. The smart meter was killing me, along with too many cell towers around me. Living with an angry alcoholic always judging me and being abusive also made my life hell. So leaving the whole abusive family behind made a big difference also. Now I live with my dogs out in the middle of nowhere and am loving it.❤😊
So glad someone is talking about Sjogrens. My doctor insists my muscle pain is caused from fibromyalgia although all my research says Sjogrens can cause muscle pain.
My rheumatologist here in Scotland, who has recently gained his professorship, merely nodded his head when I jnformed him, after months of research, that I had Sjogren's Syndrome.
Thank you Dr Diana Girnita , i was diagnose wt This sjogren’s syndromet lately , im so Happy that ive found these information Very interesting to knows all about this desease . Watching from Norway . ♥️🥰🤗👍🏽🇳🇴
Same here. I just went to a rheumatologist who told me Sjögren’s cannot be treated (other than for localized dryness). I know that’s obviously not true. I’m trying to find a new rheumatologist now but there is a shortage in my area, and I’m nervous he will think the same thing. :(
Thank You 💟 I have RA (diagnosed at age 12), and several autoimmune diseases including SS. This is very informative and I appreciate it. I am 65 now and it's exhausting dealing with all these conditions.
You're welcome! I'm glad to hear that you found the information informative and helpful. It's understandable that dealing with multiple autoimmune diseases can be exhausting, especially over a long period of time. It's important to remember to take care of yourself and prioritize your health and well-being. Wishing you all the best in managing your conditions.
It's possible that your anti-anxiety medications were causing or exacerbating your symptoms. Sometimes medications can have side effects that mimic the symptoms of certain conditions, or they can interact with other medications or health conditions in ways that cause unexpected effects.Thank you for watching!
Hi I just saw you comment. My daughter has been taking antidepressants for over a year and 6 months after taking them she started complaining of joint aches. A few months later she got diagnosed with Sjogren's syndrome. I have a question. How long has it been since you stopped taking the antidepressants and have your symptoms of SS returned ? I would really appreciate your response. Thanks
Thank you, My new medical GP suspected Sjrogens, and Im relieved because my pains wore me down. . I began to doubt myself and the unbearable pain in my body was destroying my life. I have IC and had Hunners Leisons cortorised , at the moment the IC is calm after a course of instillations. Physio is also helping my body, along with Arava meds. I often feel my body is dying, and thats the time I need to rest. Sjogrens is not nice but we must not give up helping ourselves.
Thank you so very much for covering all these problems that are rarely mentioned or addressed! It's so frustrating when only the dry eyes and mouth are mentioned I'm sending this to my children
Thank you so much. I was just diagnosed as a senior. SS is very difficult and it's also hard on my family. You have explained so much. I have been to so many doctors, for each separate symptom. No one found a reason for, until SS. I appreciate your very detailed explanation of this autoimmune disease. 🙏🏼 It so completely controls your life.
I am totally miserable with my Sjogrens. I was diagnosed in 2002. My mouth is so dry, my saliva, what I have, dries up in my mouth. I’ve had huge dental problems. I’m having severe discomfort with dry eyes. I feel the same way that others have expressed little support from Doctors and family. I have another sister with Sjogrens also. It is wonderful to see this and know that there is recognition of this disease. It was very helpful. Thank you so much
I have lost a lot of teeth. Doctors never told me. It was a dentist. Have had problems with my eyes for years. A doctor was sick of me having all these problems with my eyes. Told me he hoped he never saw me again. Then for months was suffering. But went for my check ( glasses) they send me to the hospital it was cancer on the eyelid .what with eyes and mouth etc it is very annoying, took years to diagnosis it was sjogrens
@@lisamessenger3713 Thank you. I was on both drugs at one time Evoxac in the U.S. but not available in Canada. The Salagen was extremely expensive and I had severe side effects. I have a good Dr. Now who is working to help me with my eye problems
I have sjogren's syndrome. I was diagnosed at age 52. As Primary. I am now 62 and really suffering. I think my daughter has it. She has Lupus. My Father had it and my Great Aunt's and cousin also had Lupus.
I think I’ve already posted after watching this for the first time, but I want to thank you again today I’m in a horrible auto immune flare from Sjögren’s - literally, “my everywhere hurts. “ I have had every single one of these occurrences and issues since being diagnosed in 2006 I just now had to come to the sad reality that it was time to file for disability I did so on my own and I’m quite sure I’ll get denied which is a shame because there is no way somebody who is severely affected by this disease can work to make a living and sustain themselves
Wow! This was an eye opener. I have suspected that I have Sjogren's Syndrome for some time. It appears that I have most, if not all, of the symptoms described here by Dr. Girnita in such a clear manner. I did not hear any mention for the type of tests available and/or required to confirm the existence of this disease during this presentation. I expect that it is mostly a comprehensive blood test indicating very specific markers. I'll have to check into this.
My family has discussed the possibility that my mother, my sister and my oldest niece all show symptoms of Sjogren's Syndrome. Especially my mother (89). She seems to have almost all the symptoms discussed here, whereas the rest of us have split up the symptoms among ourselves. We share some (dry eyes and mouths for one), but not all. Genetics was not discussed, but we could be a good case study. :o)
Thank god I found this video. After over ten years of my doctor just blowing off my complaints of weakness and extreme fatigue and joint pain he at least tested my blood for RA and lupus and Lyme disease. All negative. They just said Go to a rheumatologist . Researching on my own I found that Sjogrens seems to be what I’m suffering from. I’m so fatigued I can even work full days or weeks. At least now I can go to a rheumatologist !
Dr. David Brownstein and his colleagues have tested thousands of people for iodine deficiency. They’ve found over 90% to be iodine deficient. Iodine used to be in bread and milk, it’s not anymore. Iodine levels have dropped by 50% in the US since the 70’s. I’ve started taking Lugol’s 2% Iodine. After a few days I’ve noticed I have more saliva and sleep better. Every cell in the body needs Iodine especially glands. That includes lacrimal and salivary glands. Dr. Jorge Flechas and Dr. Ken Berry also have info about Iodine on RUclips.
But you have to be careful because sometimes, many times people with one autoimmune condition, like Sjogren's will have another like Hashimoto's. Excess iodine is not good for Hashimoto's.
Many, if not all autoimmune issues (their not diseases) begin in the gut. I was diagnosed with RA in 2016. Rather than suppressing my immune system with drugs, I changed my diet. So many positive changes, but the best one..weight loss and no RA.
@@trish2687 I started on Keto mid summer 2021. I discovered bread and anything with wheat was poison to my body. I no longer eat rice, potatos, pasta, or bread. There are many great substitutes for all. I’ve found many wonderful websites and YT channels to help me on this journey. Eric Berg, John Bergman, Suzy Cohen, and Terry Naturally I especially follow for their wonderful knowledge.
@@Momtocam1997 Thankyou Lisa, it gets so confusing, as some people promote plant based, but from what I'm seeing it's keto and carnivore diets that seem to be helping people with autoimmune problems. Wonder why?🤔 Going to start following the people u suggested. 🤗💞
Thank you for this very informative and helpful summary of SS. I found your posts by accident and appear to have quite a number of symptoms. It could explain a great deal of the exhaustion I have, and the ever-present low mood despite being on medication for a long time. Hope has arisen for getting help!
Thank you Doctor for this very informative video. I was so surprised when it appeared in my feed. My mother was diagnosed with Sjogren’s Syndrome in the early ‘90s. She was in her late 40s. Very few people heard of it. She had a really difficult road ahead of her physically and mentally. I wasn’t aware that it is hereditary- shame on me for not researching that. We need you know these facts as it is so important to be able to advocate for ourselves. I subscribed and share your video with my sisters. Thank you again!
I have been diagnosed about 5 years now. I developed skin manifestation and kidney issues in the past 3 years. My glands are often swollen and painful. Thank you for addressing this dusease.
I have tested just above the border of dry eyes and mouth for about two decades now, with other symptoms such as bladder dysfunction, nausea, fatigue and extensive muscle and joint pain. Before and during this period, I hve been diagnosed with Reynaud's Phenomenon, Asthma, Allergies, Chronic Sinus Infection, Tonsillitis, Zero Negative Spondylitis, Fibromyalgia, Osteopenia, Osteoporosis, Systemic Arthrosis, Gall Bladder Infection and removal, Stomach Ulcers, and recently Lichen Planus Ruber. I normally present with nausea, elevated CRP, easily bruised skin and overwhelming fatigue paired with ever increasing chronic pain and failure to rebound after exercise. My doctor and I have both been convinced for years that all of this (and whatever else I forgot to mention) is connected, and that it is some kind of autoimmune disease that runs in my family with sisters having been diagnosed with Psoriatic Arthritis, Addison's Disease, and mouth and eye dryness that is just inside if the diagnostic criteria. Yet the rheumatologists at the hospital won't give me the time of day, always claiming that I don't test right for this, that or the other. What would you recommend for me?
Your situation looks very complicated and will require a lot of attention and a very detailed analysis of your history, labs, imaging and a detailed discussion….. where are you located?
Omg I have to pee ALL THE TIME. I thought it was a side effect from constantly drinking from being thirsty all the time. But it looks like it's also a SYMPTOM. I literally get up 3-4 times a night to pee.
I just found your channel and I am so thankful. My ENT diagnosed my Sjogrens a couple of years ago although my symptoms have been present for 10+ years. Should I also be seeing a Rheumatologist to monitor this condition? I have found that most doctors do not know about this autoimmune and how it impacts the body and I have to advocate harder for my care.
I have been diagnosed with fibromyralgia. But it doesn't explain other symptoms. Fascinated by your talk ,I've never heard of this disorder before. My doctor told me not to watch things off the RUclips channel, but now I am wondering if I do have this problem?
I was diagnosed with fibromyalgia and Sjogens. I was severely deficient in Vitamin D. Many disorders mimic each other and have overlapping symptoms. Maybe your doctor needs to watch RUclips! Professional videos like thus contain valuable information to make symptoms lists cross checked against tests to diagnose and pinpoint the main disorder or disease. The first good rheumatologist I encountered ordered a complete MRI and a huge amount of lab analysis. Once RA, Lupus, and others were ruled out, she was able to treat. Best wishes!
Thank you for talking about the other issues. It's so hard to find information past dry eyes and mouth. Me with frequent headaches and recurrent numbness in hands feet and face for more than 20 yrs. Plus getting up to pee nightly and interstial cystitis. Anemic for 21 yrs.
Brilliant video, learnt more here than seeing 3 rheumatologist in ik. In our country it seems the illness is not impactful. This video really helped for an app I have on Tues with go, thank u for taking the time to do it.
Thank you so much for such a wonderful tutorial explaining sjogren's. Have recently been tested and have an upcoming appointment with a rheumatologist, hope they are as confident, knowledgeable, caring as you. Looking forward to other videos
I got a posative ANA but all other tests were good. I have so many of these symptoms. He suggested I retest in 6-12 MONTHS, but I feel horrid, I hope I can wait that long 😔 can also be lupus, but with only one positive, I guess I’m just gonna have to wait it out 🤞🏼
TY for this info!! I learned more ab my Sjögren's Syndrome from ur video than all the research I've done. There's not enough easily-accessable info ab it.
check out my new video about best foods for Sjogren's Syndrome
ruclips.net/video/EYaOJckVTSM/видео.html
What tests are performed in determining if one has SS?
@@amvderby2236 watch my video ruclips.net/video/St2ftqhZN3s/видео.html
I most certainly will. Thank you
My daughter 37 yrs old, Was diagnosed 18 yrs ago. I am hearing symptoms that could be related to the sjogrens. Symptoms she has had for years. She is seeing a neurologist for migraine headaches. Pain doctor, psychiatrist for depression & anxiety, rheumatologist for SS, eye doctor for dry eye. It seems band aids are being applied without treating the SS. Thank you for sharing this info.
Bună ziua!
Am sindrom sjogren primar.
Medicația mea este:
Plachenil
Prednison
Aspacardin
Aspenter
Piascledin
Diurex
Metropronol
Lacrimi artificiale systone
Gel lacrivisc
Vigantolete 1000
Ma i pot lua si omega3, vitamina C ? Mulțumesc!
It's wonderful to hear someone acknowledgeing all the aspects of SS. It's disheartening to be dismissed by others who believe SS is only dry mouth and eyes. One feels unfairly labelled as either a hyperchondriac or as having mental illness for just trying to get some relief. Families don't understand as they are told it is nothing. So we endure trying to find our own answers in the absence of any medical compassion, advice or meaningful interventions. Thank you.
Thank you 🙏🏻
Yup I hear you. I was diagnosed with sjorvrens in 2021. I knew that there was something wrong with me about 1 year before that. My doctor said that there was no need to get blood work done and put me on antibiotics for something else. I had a fistula and was diagnosed with diverticulitis at the same time. I ended up with a colostomy bag and couldn't get my stoma area to heal. Constant infections and pain. I started seeing an ostamy nurse explained to her what I was going through she told me to go to my doctor and get tested. That is when the blood work confirmed what I had. I suffered for over a year with mouth sores,itchy skin pimple pop outs and the fact that I couldn't eat, sleep or go to the bathroom because of some kind of pain or canker sores. Now I am seeing a rheumatologist for the pain but I still have breakouts frequently because of stress and other factors. Don't ever let anyone tell you that it's all in your head because it's not... No one knows what you are going through unless they have been there before. Thx for letting me vent 😌
I have Sjogrens also and no one understands it at all.
@@nancykorczynski5653 I have that too, my dr. Wants to do biopsy and prescribe me a drugs, but I refuse . I do a lot of research and what I did I do natural all organics . In my dry mouth I use biotene oral mouth .rinse , eye drops systene gel . I detox my body , with ginger , pinch of blck pepper , 1 table spoon of cocunot oil, 2tsbp of lemon , cinnamon and I feel good . Take good care of your hygiene . Put a lot of moisturizer on your skin . Avoid , sugary , and processed food , eat a lot of fruits and veggies and be active and of course pray to our Almighty God Jesus to heal your body . Don’t depends on medication . Just lived your life w/things all natural and you will be find. And every morning , just drink warm water all the time . More on water , because water is good for your body . Right now , I detox my body to get rid all my toxins for 1 week and good things I can still work . My body is fine and I believe in self healing . Don’t take care of your pain , do something natural and you will be fine . I hope this things can help you . God bless you ❤️
Same here. It's frustrating.
Thank you for this information. I have had Sjogren's for decades, and some symptoms are getting worse as I get older. At times, I have felt like I was going crazy and that I would never feel "good" again. No one wants to hear about your complaints. It's lonely.
Thank you for watching! I am glad it is so helpful!
Sandra Leigh, you are so right. It is sad having Sjögren’s and other auto immune disorders and chronic illnesses. Friends and family, even if they love you or are well intentioned- simply do not understand. Most doctors treat you like you are crazy, and god forbid if you’re overweight! Then ALL of your symptoms will be blamed on obesity, even if it’s not true.
Your not an omnivore stop eating poison wfpb
@@lucretiamaggio6154 Also on perimenopause or menopause, if you are a woman. I had a partial hysterectomy with one ovary removed and from 30 on, early menopausal symptoms were always blamed without any labs drawn to check hormone levels.
I was just diagnosed one month ago. It's a double edged sword. I now have answers to many issues. HOWEVER, I NOW HAVE ANSWERS TO MANY ISSUES. Yes, you get tired (no pun) about all of it. I'm a senior and it's just alot.
So many Drs need to watch this video. I get so tired of hearing ER Dr, and other specialists say to me once they read my records that I have sjogren's and that's "oh you get dry mouth and eyes." Many Drs believe that's it. So frustrating especially when you're sick and seeking help.
Well put together, informative and perfect pacing. I was diagnosed with Sjogren's over 20 years ago and learned more about this disorder in 13 minutes than in all those years.
Thank you!
and now I hypochondriac and have all the illness jajaja
I agree 100%! I have a wonderful neurologist, but this was so informative. I was diagnosed in 2014. I already had multiple sclerosis which I was diagnosed with in 2002. Its been rough. Any chronic illness is, but being informed is so important! Good luck to you! 😊
@@rhiannonwalker3047 I wish you all the best...
@@LoveMusic-pd5iz Thank you so very much!😊🤗
Thank you. You've explained so much. My Mom had it and I knew very little at the time about it. I thought it was just having a dry mouth and nobody else talked about this disease. Recently she passed from liver disease so it is serious indeed. She suffered a great deal during her lifetime but seldom complained. She was a gem and I miss her.
I am so sorry your mom suffered and that you lost her. It is such a shame that so many of our Doctors don’t know about these things that are complicated. Especially the Rheumatologists. I have told my dr about my eyes that are dry itchy crusty in the morning and asked about Sjogrens he says oh yes probably! But after seeing this video I am bet these other symptoms i have are going undiagnosed. I also have Lupus. Again, I am so very sorry about your blessed Mom 😢💔
Side effects of anxiety
People wouldnt have believed her neways i had oesteeoroporisis and artritis at 27 and 54other health issues so deeply normalized in our society
YOU ARE HERBIVORE FRUGIVORE STOP EATING POISON WFPB DOCTORS AND BROOKE GOLDNER
So very sorry to hear about your poor mother. Allopathic doctors have a lot to answer for!
Thank you for posting this.
My mother had 'severe' Sjogren's. Misdiagnosed initially as asthma, it lost her her job and complications from it ultimately killed her. It is, so far as I know, the least known of the auto-immune syndromes. It's great to see a Doctor sharing the symptoms with the wider public.
My heart goes out to any sufferers as I know how debilitating this, and its oftentimes concomitant conditions, can be. Stay strong and tell your GP / any doctor, ALL of your symptoms, even if you think they're unrelated. ❤
Most regular medical people are ignorant where autoimmune diseases are concerned. They are especially ignorant of Sjogren's and Primary Sjogren's Disease.
Sorry for Your loss😢. My Mom passed with sjogren's and Lupus so sad. I have them both also. In pain all the time. I know the pain.
I have dryness. I can't have sex. It is painful and I bleed. It is not worth the effort.
How can I become a study. I have joint pain, muscle pain and inflammation. I also have reflux, lung problems, asthma and my voice has changed.
Well, this video does help, l have sent, and was designed when l was about 40 years old I am now 60. It's been a hard road, l had to give up a job l loved. The worst thing l did was complain about consultant l saw when l was about 45. After that l haven't had the right help that l should. I do suffer daily and it's a hard life, when you are constantly ill. I have lost a lot of friends, because they have no time for an ill person. SS is horrible 😢 l need much more help, but it's so hard to get it , from doctors and friends 😢
My Grandmother had this disease in 1954, Drs from all over the World came to study her. She allowed many painful tests to help them understand.
She also had Amaloydosis, (wrong spelling) very little was known about these diseases. She died very young, but I am proud that she was able to help. I miss her every day… she was a beautiful brave flower in the garden of life.
Watch OUT for dry mouth!!! It will ruin YOUR TEETH! I ignored it for years and despite good care, I am now fighting to keep my remaining teeth. Please do NOT ignore this symptom! I watched this for the info on dry mouth just for my own info as I do NOT have Sjogren's:)
I know, I lost all my teeth despite always having brushed like mad - twice or three times a day for 30 to 60 minutes!!! Dentists don't know that Sjorgrens, and Celiac which I also got, can damage teeth. Each time I tried to mention that, I got laughed out the office and made out to be the dumb patient!!!
So true. I tried Biotene, but it contains Xylotol which causes my Interstitial Cystitis to flare up and then I ends up with a horrible UTI. I've always got a bottle of water.
I am steadily losing my teeth. Lost two just last week.
I was diagnosed with Sjogren's about 25 yrs ago. My symptoms manifested after pregnancy (I was only 18 then) & deteriorated after each subsequent pregnancy. The Drs I deal with dismiss it as cosmetic & nothing but a mild inconvenience. The reality is that my life was devastated by it; constant pain, joint swelling & arthritis, sublixating joints, weakness, fatigue, dry mouth to point of choking when eating, losing teeth because of damage from dry mouth, chest pain, breathing issues etc, etc. I was virtually bed bound for years & it still takes monumental willpower just to get up each morning because of the pain I suffer. I've met absolutely no health professional here who recognise it as a serious condition & have been made to feel like a neurotic hypochondriac for most of my life. I was so encouraged to watch your video & actually see a Dr that recognised this as a legitimate serious condition that can be utterly devastating. Thank you for the information.
Thank you for watching. Please share with others to make people aware
Omg ME TOO!!!! I had 1 doctor literally laugh at me and tell me I was a hypochondriac, because nobody has that many symptoms! I was livid!!
Good physicians like the presenter here are rare gems.
I am newly diagnosed, turned out i was misdiagnosed for years and all it required was a blood test. Well, and a new rheumatologist. This was very helpful, I think there's a huge lack of understanding about how complex and serious SS is, even among medical professionals.
Thank you
Which blood test is that?
@@yvonnekneeshaw2784 I can't remember the name of it, but it's rapid something something and according to my doc, who's also an instructor at a med school, not many docs order it.
Might be serology for Sjogren SSA and SSB blood test
Thank you for this informative video. I find my experience Sjogrens is hard because it’s not well known. Unlike rheumatoid arthritis or lupus or even MS, Sjogrens falls under the radar a a lot of times. It’s wonderful to see a doctor explain it so clearly and concisely! Thank you
Thanks for sharing!
Im diagnosed lupus RA ,fibromyalgia, cfs and sjogrens amongst other things. I got called hypo chondr ac a lot.
@@cynthiacrawford6147 me to.its so hurtful and painful
I am new on the road of Sjogrens and lots of other autoimmune issues. Diagnosed 6 years ago after a lifetime of being told, you are getting older, this in my 30's. You are too heavy, lose weight, it will solve your problems. I lost 75 pounds, most through illnesses, some through diet, exercise. It did not solve all of the problems. Finally, I went on vacation and came home, 4 days later my sister came for a 2 week stay. Needless to say, I was exhausted. My Parotid glands swelled like walnuts. Went to a younger doctor in my clinic, who is also an Internal Medicine doctor. She took one look, and started the massive amounts of testing they finally did. I found a delightful Rheumatologist that did most of the confirmation of Sjogrens. I have a great Pulmonologist, Opthomologist, Dermatologist, Rheumatologist and a few others that keep me going and listen. I don't know what the future holds, but am a guinea pig for all testing, some new meds, studies and a y way I can further the knowledge of Sjogrens to the world. The Sjogren's Foundation is a wealth of info, great support, and a way to see new treatments, beneficial products geared towards Sjogrens sufferers. Take back as much control of your life as you can, live each day as it comes. Everyday we get closer to solutions to our issues. Thank you for your understanding and time. Good luck and best wishes to any that are still reading this.
@user-qw5nx2ol8o I have had lip biopsy, Shirmer's testing for eyes, countless blood workup for RA, lympmedema, lung function testing every 3 months. So many other things I can't list, too long. It was and is brutal for diagnosis and maintenance.
Im a doctor in practice and was taking consultations from my headache and blurred vision, diagnosed with meningitis and Intracranial hypertension put on treatment in 2015. Before that I was taking medicine for Trigeminal Neuralgia, pain radiating to my eye since 2010.
Even before that I was diagnosed with degenerative spine with radiculitis (PIVD)
in 2006 . Hypothyroidism 2003 on treatment Eltroxin 100 mcg daily. In 2019 I suffered joint pain knee I consulted Orthopaedician since my mother have RA, I ask dr. To rule out autoimmune diseases as my mother hv RA. dr. sent RA factor which was negative.
In 2020 shortness of breath and falling oxygen levels HRCT chest confirmed obliterative bronchiolitis &Interstitial lung disease.
In Oct.2021, dr. Did so much of CSF tapping, to reduce ICP and diagnose the condition but only to label it Idiopathic IH.
In 2022, I observed dry mouth but I thought Dimox which I was taking 5-6 gms per day for intracranial hypertension is causing dry mouth. Meanwhile I observed my parotid enlarging continuously. I visited ENT deptt but in vain.
My condition deteriorated coz of fatigue muscle pain and my altered senses and profound memory loss. Mini mental score less than 23. And severe vasculitis lesions over limbs and abdomen. I was not able to walk, think and discontinued work completely.
I sent serology for Sjogrens syndrome SSA, SSB and ANA , thinking of exclusion both came positive . & ANA 4+
My doctors were not able to diagnose this disease And years later I myself diagnose my illness.
So wide spora of complications Sjogren syndrome can have. In spite of consulting high end specialist for neuro, ophthalmology ENT and chest specialist no one abled to pin point it.
Confirmed by biopsy in 2022 since then on HCQS 400mg ,MMF 2g
but condition is not very much improved.
I was surprised to know specialists miss the diagnosis badly.
My mom passed away last November, she had all the symptoms (except the lymphoma). Never diagnosed with SS, her doctor hasn't done much for her sadly enough. I am glad her suffering is over but I miss her very much. I just wish she had a good doctor like you are. Thank you for the information.
Thank you for watching and supporting my channel
I was diagnosed with Sjogren's in 1986. There are people who actually have told me I'm faking it. It is painful and a daily challenge. I also have diabetes which exacerbates so many of these symptoms. It's real and never ends. I wish more people were educated on this syndrome.
I'm sorry to hear that you have experienced people questioning the validity of your Sjogren's diagnosis. It is unfortunate that some individuals may not understand the complexities and severity of autoimmune diseases like Sjogren's.
Living with Sjogren's can be a challenging and painful experience, and it is important for others to recognize and acknowledge the reality of your symptoms. It is crucial for individuals with chronic conditions like Sjogren's to receive support and understanding from their loved ones and communities.
It is also important to raise awareness about Sjogren's syndrome and other autoimmune diseases so that more people can understand the impact these conditions can have on individuals' lives. Educating others about Sjogren's and its symptoms can help to promote empathy, understanding, and support for those who are affected by this condition.
I hope that you continue to receive the support and care that you need to manage your Sjogren's symptoms and other health conditions. Please know that you are not alone, and that there are resources available to help you cope with the challenges of living with a chronic illness.
My son was diagnosed at 15 for this. They retested him 5 times because they said it was impossible for a young male to have it. To this day most doctors brush him and his medical problems off.
Many of these symptoms can also be a result of an unstable upper neck with high intracranial pressure due to poor drainage from the lower brain. This results in pressure on the cranial nerves, and lower brain. After my neck injury I developed severe dry mouth - especially when lying on my back. I could roll to my right side and feel the saliva flowing better. Appreciate that an unstable sacrum affects the neck. Women have wider, more unstable pelvises. I have had most of these symptoms ( and high inflammatory markers) all from an unstable sacrum and upper neck. This is an important video ! Thank you.
Did you get your neck fixed
This is a conclusion I have come to also… because although I have tested positive for ANA with nucleolar pattern… I also had an X-ray that showed straightening of cervical spine. When I was describing the pressure in my head and behind my eyes… the X-ray tech was confused about where to point the X-ray and told me it sounds like encephalitis and I should get a lumbar puncture. That made me start looking into intracranial pressure. I realized my neck has been a problem I’ve just lived with for years… no pillow works, driving headrests are torture and I pull them off or put them on backwards. Once I started paying attention to my neck, it has helped the pressure in my eyes and the dryness is ever so slightly less dry than before. It makes me think I’m on the right track. I also think I’m putting strain on my vagus nerve and it’s messing up my digestive system and has given me SIBO.
How are you feeling now? I’ve not heard about this before and have been navigating the healthcare system for two years after testing positive ANA but ENA panel is negative so they won’t diagnose me but the dryness is out of control and the lip biopsy confirmed chronic inflammation. I don’t have serology markers for SS other than a positive ANA. It is very frustrating because I have a lot of these stamina after two bad Covid infections. Could have triggered this autoimmune response.
I think it's amazing how many SS patients and their loved ones have never been exposed to this information! It looks like we all need to share these videos with our own rheumatologist so that we have a chance of a normal life.
thank you for watching!
Thank you for mentioning fibromyalgia. I have often wondered if I have been misdiagnosed with fibromyalgia. You have just told me more than my doctor has told me in the last 15 years.
thank you for watching!
THANKS FROM SERBIA.FOR ME YOURS EDUCATIONAL LECTURES MEANS A LOT BECAUSE MY FAMILY DOES NOT TAKE ME SERIOUSLY AND I STRUGGLE FROM MY 25 .NOW I AM 53 AND CAN BEARLI FUNCTION.SO,AGAINE THANK YOU FOR TAKING TIME AND DO THIS .WISH YOU ALL THE BEST DOCTOR.
Pozdrav Dragana, da li ste na nekoj terapiji?
Thanks for creating this great video. I will definitely be sharing it. I was diagnosed with Fibromyalgia and Sjogrens in 2019. Since then, Rheumatoid/Osteo Arthritis and Lupus have been added to the list. I do have degenerative changes already in my hips, feet, fingers and shoulders from the RA. I experience a lot of the symptoms you have mentioned. My Rheumatologist is knowledgeable with the disease but it was joining a support group on Facebook that really helped me understand it better and more importantly, know that I wasn't alone.
With Sjogrens, it doesn't just stop with a couple symptoms. It's always something new and new diseases showing up. It's never just "if" more develops, it's when and what. I dread my springtime blood work and x-rays because every time there is something new to be added.
It is hard for a lot of people (and some Doctors) to understand that this disease is way more than just the dryness. The dryness is definitely a big thing though. I wake up with my mouth and throat so dry that I can taste blood from my very sore throat. My biggest symptoms aside from the dryness is moderate to severe joint and muscle pains along with frequent headaches and migraines.
I think we "Sjogies" sometimes find that it's hard for others to accept what they don't understand and to do our best to teach them. That seems to be one of the biggest complaints is that family, friends and Doctors don't understand it and it leaves the person feeling alone, ashamed, useless and a burden.
More Sjogrens awareness needs to be shared.
and i bet you are also fully vaccinated with the covid 19 clot shots?
Amen absolutely cause me and my closest son and the first argument we've ever had just have no way to understand shortly after he had three different medical incidents that left him very sick for awhile he immediately apologized and said mama if you ever feel this way for just one day I'm so sorry❤
@@chrishingson3064 Sadly, I think that's the only way for others to understand is to experience a bit of it. I hope everything is good now for you all.
Thank you so much for this video. I have this and have a few doctors say "Oh you have Sjorgren's" like it's no big deal and not a single one of them has really educated me on it and what to expect. I learned more in your 12:52 video then I've been told by my doctors. There's so much out there on the internet it's hard to know what's real and what's speculation.
It is really frustrating that I have been suffering from these symptoms and they were overlooked/I was gaslighted by doctors. I have been managing all these symptoms for almost a decade. I was only diagnosed after a neck ultrasound which I pushed for after almost a year of throat/esophageal infections. I am also diagnosed with Ankylosing Spondylitis.
I can't afford it any longer, but I use to get acupuncture frequently along with Chinese herbs. If you can do it, I would look for a Chinese doctor to give you treatments. It put symptoms in remission for a long long time.
I have to ankylosing spondylitis just got diagnosed with it
@@lisavollaro Aw, that sucks. Hope you find good medical care.
@@sandraleigh4023 me to ty I have vaculilits
@@lisavollaro Oh my, sorry to hear that!!
Thank you! There have been some tough changes going on with me. Diagnosed in 2010, things are changing. I appreciate your forthrightness and understanding of what some people have thought is just “in my head”. Tell that to my mouth-having lost all my teeth. Now, multiple things have shown up that need to be addressed-especially about the heart. Heart skipping beats for three months now. Calling Monday to see about a monitor. I refuse to give in to the depression! I LOVE life-even with such a diagnosis.
Same here..I love life even if it seems so frustrating at times. I have Sjogrens, POTS, long covid , heart issues and TMJ . Now knee n shoulder giving up..what a ride
I want to thank you for a very well done informative discussion on this subject. Not only did you cover the symptoms, but the testing and other topics no one else has - including my doctors!!! You are amazing! Thank you again!
Please share with others! And don’t forget to subscribe I will add more info soon. Thank you
@@rheumatologistoncall oh, THAT’S the first thing I did, subscribe! You are so informative! And boy I am FAMOUS for my “sharing”! 😂I gladly tell people things that I think can help them. Already told my daughter about you👍🏼🤗♥️
@@sukr8zee thank you 🙏🏻
I have swollen salivary glad 2 side under ear.. No pain.. What is this?????
I too was diagnosed with Sjogrens positive test just about 2 years back. Many of the symptoms also mocked symptoms hypothyroidism present and so before that positive ex, the thyroid was blamed for a lot of the symptoms. My now older sibs had a diagnosis many years before I even knew what it was..,they had the means to go to Mayo’s for the testing. They never mentioned anything about Sjogrens to me so I wasn’t mocking or aping their symptoms. One day, in our old age,they told me that I likely had it too because I’d had the same symptoms they had known about for many years. It took some doing but I finally convinced my integrative MD that I had it ..enough times so that more definitive tests were used by that time and I did indeed have a positive for Sjogrens from the lab.
Now I understand there’s actually a med treatment for Sjogrens but I’d bet none of us will be able to get it because it’s currently on the forbidden list due to people trying to use it legitimately for Covid..and that is.,Hydroxychloroquin. I have yet to ask my Dr. about its use but I have some symptoms that have been on me since October of 2022 and nothing actually stops the debilitating bouts of weakness,,inner tremors, depression and the coming and going of mouth or eye or throat dryness. The MD has changed my thyroid meds 3 different times over the last 6 years and can’t find the reason why my TSH levels are so out of balance…so I received a dx of hypothyroidism. But different supps have seemed to help stop the tremors for a time and then it’s like heaven on earth.,no tremors, nor weakness and trembling outwardly, and strength like I had 20 years ago. Thank you Dr.. for this video that ties..it..all together.
My husband has been struggling with Sjogren’s for just ever. We think he developed his first symptoms in his early 20s, but no diagnosis until he was in his 50s. He’s in his 70s now, and it can get really bad sometimes. Chronic pain, sometimes severe, numbness and weakness, head pain, general fatigue. He can’t drive any more because of lack of feeling in his feet. It’s a nasty disease, similar to my dad’s rheumatoid arthritis.
I'm sorry to hear that your husband has been struggling with Sjogren's for so long. It's a challenging condition to manage, and it can have a significant impact on a person's quality of life.
I appreciate you sharing your experience with the condition, as it helps to raise awareness and understanding of Sjogren's and its impact on individuals and families.
I appreciate this information. I was diagnosed over 6 years ago by a rheumatologist but he did nothing about it and didn’t give me any information except a one page piece of literature. I have since told every doctor I have ever had about it and they just look at me. I have yet to have a doctor address it. Any information I have gathered has been on my own. Most doctors see that I go to a pain clinic for my arthritis and fibromyalgia and they just don’t want to deal with me. There is such a stigma about pain management medication that it seems every doctor thinks I am after pain medication. They couldn’t be more wrong. It’s so frustrating. I appreciate your video and the information you provided .
Thank you for your comment. Exactly very informative video. I too suffer from pain and diagnosed as Rheumatoid Arthritis. You are exactly correct doctors are afraid refilling or prescribing pain meds. So glad I'm with a new Hematologist; however, blood work returned as having SS. I thought it was a Swedish name when first saw it.
Hope you 🎉heal today.
Wow I learned more on this video than 4 years going to rheumatologist
Thank you so much for this information .... I was diagnosed with sjorgrens in 1998 ...before that I thought I had mumps when my glands got so swollen! When the diagnosis was confirmed by a physician he even kept photos of the swelling to keep for his own reference books! I have been hospitalized twice when I was totally unable to walk and have since realized what is happening instead of panicking when I have bad symptoms. I went through a period of choking for no apparent reason , unable to breath ...my husband did the hymlich maneuver which got the air into my lungs again....very scary ! I am now 68 years old living a happy active life when I am able to and relaxing and trying not to be stressed when I am not well. Strangely enough , I have found that carrot and apple smoothies and sleep aid a quick recovery from a day in pain ( I don't like smoothies usually!) I share these experiences in the hope that it will help others. I am So pleased to see that you are putting information like this on utube as I have struggled through many years when most medical professionals didn't even know about sjorgrens. Fortunately I have a GP who was willing to seek out information sothat he could understand the diagnosis better. Thank you 😊
I've been diagnosed with sjogrens syndrome for the past 15 to 20 yrs, everything you have spoken about .
Term refe
What medicine do you use?
Finally someone is talking about this. I’ve had it for years now before I even figured it out. The first time I’ve heard anyone really talk about it. It’s very hard to live with so many symptoms besides all my other health issues. When I tell (even doctors offices) I have to spell it. Noone seems to interested in hearing about all my symptoms,they just blow me off like I don’t know what I’m talking about. I finally asked my PC dr. who do I see and I will be going to a rheumatologist. I hear there isn’t anything that can be done except treat your symptoms. I hope this get added to the list of diseases that certainly needs much more information and studies on even though it to late for me. Thanks for listening and for putting the information out there!
Thank you 🙏🏻 please watch other videos about Sjogren’s. You have many in my channel!!
I was diagnosed this year after several years of illness. This video is spot on. Thanks for sharing. It's a good overall summary of the disease.
Thank you for watching my video and supporting my educational efforts!
Thank you for all of this wonderful information! I've had Sjogrens for 30 plus years and no one has explained the symptoms, tests, and possible complications this well.
Thank you
More info will come, subscribe and share with others
Diane Bondus..
Reply
Because those who you went to did not know themselves...
Do not make medical People into God's
There is only ond God..who knows all is all and can do more than we ask or think. Ephesians 5:20 KJV
TRUST IN JESUS. YAHSHUA
JESUS IS THE DIVINE PHYSICIAN
RIMANS 10:13
All who call upon the Lord will be saved.
Really 😊
Thank you Dr. for sharing this video.
I have been diagnosed with Sjögren's, and I have been suffering from dry eyes/mouth, depression, digestive issues, anaemia, brain fog and spinal problems that have caused me to have to quit my job. (I worked in a hotel in laundry/housekeeping, and the spinal damage has made it impossible to continue.)
At age 48 I am unable to work and am trying to get disability...this truly is a devistating disease, and I sympathise with all of you whose lives have been destroyed by this terrible disorder.
Hoping this video will help bring attention to a disease that is so often overlooked or downplayed as not being serious.
Thank you for watching my videos!There are many about Sjogren's in my channel!
As a young boy,(12 yrs old), I continually would suffer from “swollen glands” that the very much resembled the mumps. In my mid twenties I started getting out of chairs like a stiff old man. I worked hard and just figured everyone felt like this and I just needed to suck it up. I was finally diagnosed with sjogren and SFN in my early 50s. I look normal but feel like hell! Mad respect for anyone suffering with this!
thank you for watching my videos
Thank you doctor. I have been educating myself on Shogren's . I am a bit tired of mostly vague labels, like "undifferentiated autoimmune connective tissue disease ". Your video is very clear, it addresses many of my symptoms. I'm going to watch your video on food.
Thank you! As a newly diagnosed patient with SS, I can see that I have probably had this for a while. So much of what I've tried to tell my doctors for years has been pushed off to my being a breast cancer survivor, and the treatments I had to undergo for that. But even before that, I have had half my face tingle, dryness of mouth and eyes, difficulty swallowing, dry skin, muscle and joint pain. Stomach issues, heart palpitations... All it took was a caring NP to run a test that came back abnormal to set the ball rolling. My grandma had rheumatoid arthritis, as well as other autoimmune issues, and I have cousins on both sides as well with lupus. I'm glad I mentioned that and kept pushing for answers! Now we try to find something to alleviate the symptoms so I can live a halfway normal life.
Thank you, share the video with others
I’m glad that you managed to get a diagnosis after so long. Could you tell us what the test was that came back abnormal please? It may be helpful for others trying to get a diagnosis. Many thanks.
So much wonderful knowledge in 12 mins. Thank you!!! I’ve had sjogrens and rheumatoid arthritis for 10 years and this video cleared up five years of misinformation. 🙏🏽
So nice of you to say that! Thank you 🙏🏻! Please share with others as this is such a common situation when patients do not understand or are not explained well. Watch my other videos, more will come
I finally got diagnosed in 2018 with Sjogrens.
Dryness In eyes
Dryness in mouth
Dryness in vagina
Stomach issues/gastric issues
Pain in hand/feet
Body pain
Swelling in face
Weakness
Sinus issues, dryness with cough- hoarse voice
My hips hurt, steps bother me
I’m constantly told I need antidepressants and decided that I’m not going to go that route.
I also have neurological issues that are dismissed
I have had nerve conduction tests done and dismissed saying that I am fine.
Micro hemorrhage found in urine and had bladder scope being told everything is fine.
I believe my kidneys are being affected.
Sun can cause outbreaks and I was told it could be related to something with my blood.
Thank you for your channel. I’m going to follow your channel!
I am currently working with a rheumatologist from UW Madison ❤.
Thank you for watching my channel!
My aunt was diagnosed with Sjogren's Syndrome and later developed Non-Hodgkin's Lymphoma. She died in 1994 at 42 years old. I know that my mom was tested for Sjogren's around the time my aunt died because she had some of the symptoms, but it came back negative. After watching this video, I think she might need to be checked again.
I’m so sorry for your loss. I have a wonderful rheumatologist who checks my SED rate regularly because of the propensity for Sjogren’s patients to develop lymphoma. This disease is so much more serious than people think and I’m very very sorry that you lost your aunt to this disease at such a young age.
A big thank you here. I learned a lot! My cousin has SS, and she's also had cancer three times. Now, I'm thinking about the symptoms and realize that I have quite a few of the ones you mentioned. Autoimmune problems run in the family, and I'm going to talk to my doctor about SS.
Kuzeniniz şimdi nasıl
And it can be hereditary. My grandmother, mother, myself, and my daughter, all have SS, and my mother did eventually develop Non-Hodgkin's lymphoma. But, thankfully, she had an excellent oncologist & has been cancer free for 7 years.
Thank you for watching
I was diagnosed with sjogrens in 2005. It explained a lot of problems i was having as a kid and doctors never thought to test for it. I have skin issues, tons of pain everywhere, have lost all my teeth and continue to have swelling issues. I have had so many surgeries because of sjogrens complications. Recently had a stent placed in my in my LAD because it was clogged 95% and never knew. I was so close to a heart attack or stroke. Depression is a big issue since i can't work or do many things because of the pain. A lot of people don't understand and i have been called a hypochondriac many times. Getting disability was so hard because my disease is not physically seen. Thank God i found an amazing doctor in my area that fights for me all the time. Thank you for your videos.❤
Thank you so much for taking the time to watch and comment. Your support means the world to me.
This is my first time seeing this and I was diagnosed with Sjogren's back in December of 2019 and I have now have most of all of those 10 signs of Sjogren's and I never even heard of it before except when I had gotten diagnosed with it
Thank you for sharing this video. My daughter was diagnosed with Sjogren’s about 2 years ago, but she is being seen by her doctor.
I have multiple sclerosis and sjogrens syndrome. I was diagnosed with the two almost 20 years apart. MS right after my first son was born and then SS in 2014. This was so wonderfully put together and informative. Thank you so much. I have a wonderful neurologist, but I think he waits for me to bring my symptoms to him as to not overwhelm me sometimes. Especially where the two diseases can have similar symptoms. This definitely had quite a few ah ha moments for me! 😊
I'm glad to hear that you found the information in the video helpful and informative. It can be difficult to manage multiple chronic conditions like MS and Sjogren's Syndrome, but having a good understanding of your symptoms and how they relate to each condition can help you manage your health more effectively.
It's great that you have a supportive and understanding neurologist. It's not uncommon for doctors to wait for patients to bring up their symptoms, as they don't want to overwhelm patients with unnecessary tests or treatments. However, if you feel that your symptoms are not being adequately addressed, it's important to speak up and let your doctor know. You are the best advocate for your own health, and your doctor should be willing to listen to your concerns and work with you to find the best course of action.
Remember to keep track of your symptoms and any changes in your condition, and bring them up with your doctor at your next appointment. And don't be afraid to ask questions or seek out additional resources to help you manage your health.
I have rematoide arthritis and 9of the 10 symptoms you,ve just listed thought I was going crazy thank you so much . Now the challenge is getting somebody to listen and believe me
Thank you for watching!
THANK YOU. I HAD LYMPHOMA 14 YRS. AGO....I HAVE SEVERE STOMACH PROBLEMS NOW. IT IS GOOD TO FIND YOUR CHANNEL AND NO SOMEONE IS OUT THERE FOR US. MY MOTHER ALSO HAD IT..
Thank you for watching
Thank you so much, Dr Girnita, for this excellent presentation! I was diagnosed as having SS back in the 1980s - actually adding to an already-extensive list of autoimmune conditions that I suffer from. You have really broadened my knowledge of this disease, and how many systems of the body can be affected! Thanks again!
Watch my next video too about Sjogren’s
ruclips.net/video/ia3jGVzg3CY/видео.html
@@rheumatologistoncall Thank you - I shall watch it! I have just subscribed to this very informative channel! All the best!
Oh my goodness, you just described my entire autoimmune journey. SS was the first of many autoimmune diseases I was diagnosed with. I had no idea that there were so many other symptoms that I’ve suffered with for a long time. I have SS, fibromyalgia, Psoriatic Arthritis, ulcerative colitis, end stage Hashimoto’s disease & Pemphigus Vulgaris. I was also born with a Primary Immune deficiency disorder in the IgG subclasses. THANK YOU so much for sharing your knowledge & for validating all of us here. Bless you!
Share it with a friend and thank you for watching!!!!!
@jo6554 - If you are still here, what is your immune deficiency called? I have IG variations - low IGG2, low IGA2, and near absent IGM. There are other low counts, too. The immunologist tells me that my symptoms do not yet correspond to a known condition.
For some years now, I have had a very unpleasant bitter taste in my mouth that effects the flavors of what I eat. If I eat anything that is already bitter, the taste is greatly magnified, so I avoid some foods. Does this go along with Sjogren's? Various medicos have made suggestions that have not yet helped. (I had rheumatic fever as a child, another autoimmune disease.)
I tested positive for lupus and Sjogrens some years back. It’s good to have information you are providing.
Thank you 🙏🏻
Same here I was diagnosed with Lupus and Sjogrens. I learned more about it from this video than Dr. THANK YOU
@@princessamor9933 thank you
Where were you 25 years ago?
Same here Lupus and Sjogrens.
Thank you very much!
I learned alot.
Most of all I really appreciated the way you spoke at a slower pace, which made it easier to grasp all the information.
Currently, I have Hashimotos disease and probably should go see a Rheumatologist.
I do have about 4 or 5 of the symptoms that you went over regarding Sjogrens.
So, thank you for sharing your knowledge with us!
Thank you 🙏🏻
I was diagnosed in '94 with FMS. In 2003 with Sjogren's syndrome. I got lacrimal tear duct plugs that very day. I was told my corneas looked like mountain ranges. I had already been observed to have optic nerve swelling before then.
I have had issues with asthmatic bronchitis since I was a teen, and was a beautiful singer until about 5 years ago. Lymph glands in my neck have been swollen forever. I lose my voice frequently. And have the sensation of needing to cough for years.
My maternal grapa died of hodgkin's disease in his 50's. Mom had kidney problems. Osteoporosis claimed my grama from a fall that broke her pelvis, and complications took her. Mom broke her hip at 67 and 2 weeks after surgery, her kidneys failed due to high levels of antibiotics needed for infection at the surgical al sight.
I am almost 60. Worried. I have Degenerative disc disease and wear a brace half the time or more. Shoulders hurt now too.
Quite tired of fighting to feel good as nothing really works. Learning to accept pain and discomfort is something you do as you get older.
It is ridiculous to think I may not be able to breathe the older I get.
Me too ... is there any treatment or what treatment r u taking now ?
@@vampireforever6937 I use symbicort. It does a good job. I just wish it didn't cost so much, so I try to only use it if I get sick.😭
You have described several of my symptoms which I had not put together with my previously diagnosed Sjögren's syndrome. This is helpful in managing symptoms, and life, so thank you 🙏🏻
Can someone with SS have their teeth start breaking and falling out? I’ve been thinking it was my Breast Cancer that destroyed my teeth. I have such a dry mouth that it’s hard to speak. My dry mouth wakes me up. I have 5 broken teeth currently. I don’t have Dental Insurance and I can’t afford food so Dental isn’t an option. I’m in excruciating pain from my teeth. I’d never heard of SS until very recently. I fit so many of these symptoms, a Conversation with my Doctor is an absolute must! Thank you for this information and channel! I’m very appreciative 😊
I hope you are able to see a doctor and find relief. 😢
Without taking Evoxac or Salagen, your teeth will be destroyed
Love you doctor you are amazingly informative and helpful, God bless you ❤️🦋
thank you
I'm sobbing. Thank you. After Covid ravaged me a few times...things are harder than ever. I'm tired for sure. Affirming words.
I’ve suffer with long covid. I feel your frustration, as I’m struggling to regain my health as well. Best wishes
I already had Graves disease so when I started researching dry mouth and dry eyes and found out it could be another autoimmune disease, I knew I had Sjogren's. The blood tests came back negative which is not that uncommon. My doctor didn't believe me until I went to an eye doctor and had a Schirmer test done. If your doctor doesn't believe you, either make a very compelling argument or find another doctor. Hope everyone gets the help they need.
I have Graves disease too...thats enough to make anyone feel horrible!! :(
I know this video is a year old but I’ve been diagnosed with Hashimotos, RA, Sjogrens, mixed connective tissue and Addison’s Disease. Why aren’t doctors as clear as you?!! I’ve had Sjogrens since 2015 and this is the most education I’ve had on it since then!! Thank you!!! 🙏🏻
great!!! i am so happy!
Can you get a cracked tongue that hurts all the time with Sjogrens? It just feels like an open wound all the time.
I have many of those symptoms along with other issues and was born sickly. I was born into an abusive junk food family. Drs never helped. I finally stopped with the drs after the last one almost killed me and had absolutely no remorse Long story short, suffice it to say after many years of research now I take thyroid supplements, changed my diet, grow most of my own food, moved from Minnesota to Arizona,dryer higher elevation has helped and I have my rife machine and now at 66 I feel better than I ever have. I also am very electrical and chemical sensitive, so have moved off grid. The smart meter was killing me, along with too many cell towers around me. Living with an angry alcoholic always judging me and being abusive also made my life hell. So leaving the whole abusive family behind made a big difference also. Now I live with my dogs out in the middle of nowhere and am loving it.❤😊
Sore throat,joint pain, constipation, fatigue, muscle weakness, depression, anxiety, excessively sweating..are symptoms..sjogrens syndrome...
So glad someone is talking about Sjogrens. My doctor insists my muscle pain is caused from fibromyalgia although all my research says Sjogrens can cause muscle pain.
Yes it does
My rheumatologist here in Scotland, who has recently gained his professorship, merely nodded his head when I jnformed him, after months of research, that I had Sjogren's Syndrome.
Thank you Dr Diana Girnita , i was diagnose wt This sjogren’s syndromet lately , im so Happy that ive found these information Very interesting to knows all about this desease . Watching from Norway . ♥️🥰🤗👍🏽🇳🇴
Glad it was helpful!
I'm really glad I found this channel, things are so well explained and easy to follow
Thank you
None of my docs talk about any of this even tho i have tons of these symptoms...
I was diagnosed with sjorjrn.s and suffer from most of those systems
20 years ago
Change your doctor.
Same here. I just went to a rheumatologist who told me Sjögren’s cannot be treated (other than for localized dryness). I know that’s obviously not true. I’m trying to find a new rheumatologist now but there is a shortage in my area, and I’m nervous he will think the same thing. :(
@@IndoorTabbyCat are you on any medication?
Thank You 💟
I have RA (diagnosed at age 12), and several autoimmune diseases including SS. This is very informative and I appreciate it. I am 65 now and it's exhausting dealing with all these conditions.
You're welcome! I'm glad to hear that you found the information informative and helpful. It's understandable that dealing with multiple autoimmune diseases can be exhausting, especially over a long period of time. It's important to remember to take care of yourself and prioritize your health and well-being.
Wishing you all the best in managing your conditions.
I was diagnosed with this years ago. After I went off my anti-anxiety medications, my symptoms went away completely. Interesting.
It's possible that your anti-anxiety medications were causing or exacerbating your symptoms. Sometimes medications can have side effects that mimic the symptoms of certain conditions, or they can interact with other medications or health conditions in ways that cause unexpected effects.Thank you for watching!
Hi I just saw you comment. My daughter has been taking antidepressants for over a year and 6 months after taking them she started complaining of joint aches. A few months later she got diagnosed with Sjogren's syndrome. I have a question. How long has it been since you stopped taking the antidepressants and have your symptoms of SS returned ? I would really appreciate your response. Thanks
@@SuperJofina I have been off antidepressants for over 4 years and the sjogrens symptoms have not returned. I was taking Celexa.
Thank you, My new medical GP suspected Sjrogens, and Im relieved because my pains wore me down. . I began to doubt myself and the unbearable pain in my body was destroying my life. I have IC and had Hunners Leisons cortorised , at the moment the IC is calm after a course of instillations. Physio is also helping my body, along with Arava meds. I often feel my body is dying, and thats the time I need to rest. Sjogrens is not nice but we must not give up helping ourselves.
Thank you so very much for covering all these problems that are rarely mentioned or addressed! It's so frustrating when only the dry eyes and mouth are mentioned I'm sending this to my children
Glad it was helpful!
I've had or I was diagnosed with sjogens 25 years ago. It's really affecting me at 56 not many have input. Thank you
Thank you for watching my videos and taking the time to comment! subscribe and share my channel to be able to help other people!
Thank you so much. I was just diagnosed as a senior. SS is very difficult and it's also hard on my family. You have explained so much. I have been to so many doctors, for each separate symptom. No one found a reason for, until SS. I appreciate your very detailed explanation of this autoimmune disease. 🙏🏼 It so completely controls your life.
watch this also
ruclips.net/video/gDsf7HaL5R8/видео.html
I am totally miserable with my Sjogrens. I was diagnosed in 2002. My mouth is so dry, my saliva, what I have, dries up in my mouth. I’ve had huge dental problems. I’m having severe discomfort with dry eyes. I feel the same way that others have expressed little support from Doctors and family. I have another sister with Sjogrens also. It is wonderful to see this and know that there is recognition of this disease. It was very helpful. Thank you so much
I have lost a lot of teeth. Doctors never told me. It was a dentist. Have had problems with my eyes for years. A doctor was sick of me having all these problems with my eyes. Told me he hoped he never saw me again. Then for months was suffering. But went for my check ( glasses) they send me to the hospital it was cancer on the eyelid .what with eyes and mouth etc it is very annoying, took years to diagnosis it was sjogrens
You need Evoxac or Salagen for your mouth and Restasis for your eyes
@@lisamessenger3713 Thank you. I was on both drugs at one time Evoxac in the U.S. but not available in Canada. The Salagen was extremely expensive and I had severe side effects. I have a good Dr. Now who is working to help me with my eye problems
@@lisamessenger3713 can’t get evoxac here and severe side effects with salagen
I had laser treatment on eye and punctal plugs inserted. Much better
I have sjogren's syndrome. I was diagnosed at age 52. As Primary. I am now 62 and really suffering. I think my daughter has it. She has Lupus. My Father had it and my Great Aunt's and cousin also had Lupus.
I think I’ve already posted after watching this for the first time, but I want to thank you again today I’m in a horrible auto immune flare from Sjögren’s - literally, “my everywhere hurts. “ I have had every single one of these occurrences and issues since being diagnosed in 2006 I just now had to come to the sad reality that it was time to file for disability I did so on my own and I’m quite sure I’ll get denied which is a shame because there is no way somebody who is severely affected by this disease can work to make a living and sustain themselves
thank you so much for watching !
i know it must be hard for you!
hang in there!
Wow! This was an eye opener. I have suspected that I have Sjogren's Syndrome for some time. It appears that I have most, if not all, of the symptoms described here by Dr. Girnita in such a clear manner. I did not hear any mention for the type of tests available and/or required to confirm the existence of this disease during this presentation. I expect that it is mostly a comprehensive blood test indicating very specific markers. I'll have to check into this.
please watch my other videos! i have many about sjogren's in my channel!
My family has discussed the possibility that my mother, my sister and my oldest niece all show symptoms of Sjogren's Syndrome. Especially my mother (89). She seems to have almost all the symptoms discussed here, whereas the rest of us have split up the symptoms among ourselves. We share some (dry eyes and mouths for one), but not all. Genetics was not discussed, but we could be a good case study. :o)
@juliestevens6931 - Wikipedia mentions "...families with a history of Sjögren's syndrome..." if that helps.
I wish I lived somewhere that I had access to a great rheumatologist like you. I am so unwell and my auto immune diseases are not managed properly
Thank you for the kind words!
Thank you so much I’ve had sjorgrens for over 20 years and this video has answered a lot of questions especially reflux
Thanks for watching my video!
Thank god I found this video. After over ten years of my doctor just blowing off my complaints of weakness and extreme fatigue and joint pain he at least tested my blood for RA and lupus and Lyme disease. All negative. They just said Go to a rheumatologist . Researching on my own I found that Sjogrens seems to be what I’m suffering from. I’m so fatigued I can even work full days or weeks. At least now I can go to a rheumatologist !
share it with others, this is a common situation, see my other videos about sjogren
Dr. David Brownstein and his colleagues have tested thousands of people for iodine deficiency. They’ve found over 90% to be iodine deficient. Iodine used to be in bread and milk, it’s not anymore. Iodine levels have dropped by 50% in the US since the 70’s.
I’ve started taking Lugol’s 2% Iodine. After a few days I’ve noticed I have more saliva and sleep better. Every cell in the body needs Iodine especially glands. That includes lacrimal and salivary glands. Dr. Jorge Flechas and Dr. Ken Berry also have info about Iodine on RUclips.
But you have to be careful because sometimes, many times people with one autoimmune condition, like Sjogren's will have another like Hashimoto's. Excess iodine is not good for Hashimoto's.
Many, if not all autoimmune issues (their not diseases) begin in the gut. I was diagnosed with RA in 2016. Rather than suppressing my immune system with drugs, I changed my diet. So many positive changes, but the best one..weight loss and no RA.
Excellent!!!! I promote a scientific based approach for healing the gut in my online course
What type of diet are u on? Any advice pls. I have major gut issues so am sure it could be causing the Sjogrens.
@@trish2687 I started on Keto mid summer 2021. I discovered bread and anything with wheat was poison to my body. I no longer eat rice, potatos, pasta, or bread. There are many great substitutes for all. I’ve found many wonderful websites and YT channels to help me on this journey. Eric Berg, John Bergman, Suzy Cohen, and Terry Naturally I especially follow for their wonderful knowledge.
@@Momtocam1997 Thankyou Lisa, it gets so confusing, as some people promote plant based, but from what I'm seeing it's keto and carnivore diets that seem to be helping people with autoimmune problems. Wonder why?🤔 Going to start following the people u suggested. 🤗💞
@@trish2687 You are welcome...Best wishes for great health...I'm living proof
Thank you for this very informative and helpful summary of SS. I found your posts by accident and appear to have quite a number of symptoms. It could explain a great deal of the exhaustion I have, and the ever-present low mood despite being on medication for a long time. Hope has arisen for getting help!
See my new video in my channel
I am so blessed I found you. I understand why I’m feeling like these
Thank you for watching
Excellent presentation . Thanks
Thank you 🙏🏻
Thank you Doctor for this very informative video. I was so surprised when it appeared in my feed. My mother was diagnosed with Sjogren’s Syndrome in the early ‘90s. She was in her late 40s. Very few people heard of it. She had a really difficult road ahead of her physically and mentally. I wasn’t aware that it is hereditary- shame on me for not researching that. We need you know these facts as it is so important to be able to advocate for ourselves. I subscribed and share your video with my sisters. Thank you again!
Thank you for sharing and spreading the word! More videos on Sjogren’s will come
Thank you for the info my rheumatologist never said any of that to me but this knowledge is powerful and
I appreciate all your help
You are so welcome
I have been diagnosed about 5 years now. I developed skin manifestation and kidney issues in the past 3 years. My glands are often swollen and painful. Thank you for addressing this dusease.
Thanks for sharing! Thank you for watching my videos! share them with other people to help them be educated!
I have tested just above the border of dry eyes and mouth for about two decades now, with other symptoms such as bladder dysfunction, nausea, fatigue and extensive muscle and joint pain. Before and during this period, I hve been diagnosed with Reynaud's Phenomenon, Asthma, Allergies, Chronic Sinus Infection, Tonsillitis, Zero Negative Spondylitis, Fibromyalgia, Osteopenia, Osteoporosis, Systemic Arthrosis, Gall Bladder Infection and removal, Stomach Ulcers, and recently Lichen Planus Ruber.
I normally present with nausea, elevated CRP, easily bruised skin and overwhelming fatigue paired with ever increasing chronic pain and failure to rebound after exercise. My doctor and I have both been convinced for years that all of this (and whatever else I forgot to mention) is connected, and that it is some kind of autoimmune disease that runs in my family with sisters having been diagnosed with Psoriatic Arthritis, Addison's Disease, and mouth and eye dryness that is just inside if the diagnostic criteria. Yet the rheumatologists at the hospital won't give me the time of day, always claiming that I don't test right for this, that or the other.
What would you recommend for me?
Your situation looks very complicated and will require a lot of attention and a very detailed analysis of your history, labs, imaging and a detailed discussion….. where are you located?
Omg I have to pee ALL THE TIME. I thought it was a side effect from constantly drinking from being thirsty all the time. But it looks like it's also a SYMPTOM. I literally get up 3-4 times a night to pee.
Wow! Dr Diana just gave me more info on Sjogrens/ auto immune disease, than any of my dr’s. Thank you Doc!
There are many videos in my channel about Sjogren’s, check them out!
Rejoicing in my soul with this info
can't cry No tears 😢 , Thank you Dr. ❤
Thank you for watching and supporting my channel
I just found your channel and I am so thankful. My ENT diagnosed my Sjogrens a couple of years ago although my symptoms have been present for 10+ years. Should I also be seeing a Rheumatologist to monitor this condition? I have found that most doctors do not know about this autoimmune and how it impacts the body and I have to advocate harder for my care.
Thank you for watching and sharing! Yes you should see a rheumatologist for following up
I have been diagnosed with fibromyralgia. But it doesn't explain other symptoms. Fascinated by your talk ,I've never heard of this disorder before. My doctor told me not to watch things off the RUclips channel, but now I am wondering if I do have this problem?
I was diagnosed with fibromyalgia and Sjogens. I was severely deficient in Vitamin D. Many disorders mimic each other and have overlapping symptoms. Maybe your doctor needs to watch RUclips! Professional videos like thus contain valuable information to make symptoms lists cross checked against tests to diagnose and pinpoint the main disorder or disease. The first good rheumatologist I encountered ordered a complete MRI and a huge amount of lab analysis. Once RA, Lupus, and others were ruled out, she was able to treat. Best wishes!
Thank you for talking about the other issues. It's so hard to find information past dry eyes and mouth. Me with frequent headaches and recurrent numbness in hands feet and face for more than 20 yrs. Plus getting up to pee nightly and interstial cystitis. Anemic for 21 yrs.
Brilliant video, learnt more here than seeing 3 rheumatologist in ik. In our country it seems the illness is not impactful. This video really helped for an app I have on Tues with go, thank u for taking the time to do it.
thank you!!!!very insightful!
Thank you so much for such a wonderful tutorial explaining sjogren's.
Have recently been tested and have an upcoming appointment with a rheumatologist, hope they are as confident, knowledgeable, caring as you.
Looking forward to other videos
Thank you 🙏🏻
I got a posative ANA but all other tests were good. I have so many of these symptoms. He suggested I retest in 6-12 MONTHS, but I feel horrid, I hope I can wait that long 😔 can also be lupus, but with only one positive, I guess I’m just gonna have to wait it out 🤞🏼
This is an excellent video! I am linking to it for a class assignment. Thank you Dr. Girnita! :)
TY for this info!! I learned more ab my Sjögren's Syndrome from ur video than all the research I've done. There's not enough easily-accessable info ab it.
Look at my other videos about Sjogren’s, more will come
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