I got diagnosed 5 years ago and have not had any treatment but been maintained. It has grown bad and brought pulmonary fibrosis,COPD, honeycomb lungs,rheumatoid arthritis. Gerd, and so much more plus now have heart disease. Honestly I have mainly been on my own and now my body is giving up,the mind is strong,my body is going. This disease needs to be educated cause I couldn't tell you how many nurses and even doctors don't know anything about it. I bet I don't finish the year. Stay strong soldiers
My 11 year old have an autoimmune disease that caused him unable to walk since January called HSP . but after using herbs medicine he can walk now God bless you Dr imenherbal on RUclips ........ 💯
@@angelinajimenez5520 exactly it's very frustrating as I've been begging Drs to please investigate more and more being a Quadraplegic and taking several medications that cause dry mouth that is their only answer for me I thank you Dr for educating ... I wish my Drs would watch this as well
Omg!! I was a nurse for 50 years (25 years as a nurse practitioner) and have found out more about this disease from this video than I ever had before! Thanks!
Thanks for serving others. It’s a very meaningful life of service. I do wish to say that it’s so sad there’s a severe lack of information on this diagnosis by many (possibly most) medical professionals.
Doctors at hospitals are only in business to make money they’re not actually trying to help anyone Dr. Berg actually wants to help people it doesn’t care about money
I too have Sjogrens, Lupus, and osteoarthritis.i have had 56 surgeries from abdominal complications, ive had so many complications but i am still here and for that i am so thankful and grateful to GOD
Some neurological issues are being found to be caused by serious toxic overload of many contaminates from pesticides, herbicides and such. Round up is a major world wide problem. Causes major neurological problems along with others that are supposed to be banned.
Average age of onset is 40-60 years...I got it when I was 19 and I have learned more about this disease from this channel than from my doctors in the last 16 years! Thank you so much!
Thank you for sharing your experience. I can only imagine how hard is for you.Thank you for taking the time to watch my RUclips channel! I appreciate your support and interest in my content. It is always motivating to know that my videos are reaching and resonating with people like you. Thanks again for being a part of my community and supporting my work.
Weird. I started with symptoms when I was 19 years old... It's ruined my life. I'm 54 now and for all time I have battled severe pain only in my feet... Only recently I was told this is probably what's causing my pain... I look forward to dying .. it can't come soon enough
@@almahernandez06 .I deal with it because I don't have a choice.. it's cost me every job I ever had.. I lose every place I live but I'm still alive which means I keep doing this bullshit ... Mine is a horrible resistance..
I’ve was diagnosed 25 years ago but continue to be frustrated that it’s not taken serious as a systemic disease. If I say “I have Sjogren’s” Drs say “oh, you have dry eyes and mouth. “
My best friend died of this and I just couldn't understand how a 48 year old woman could just die from this. I am a nurse educator but never learned anything about this in school. So sad
I was diagnosed at 35 y.o.Sjogren's too my career, I was an RN in Labor and Delivery for almost 20 years, got diagnosed and 5 years later was on disability. I'm pretty well managed, however I struggle with pain and fatigue every day. I have these bumps under my skin all over that are painful to touch, neuropathy and my feet turn bluish purple when I am sitting, yet no one thinks anything can be done about it. I am told to sit with my feet up most of the time when I can. My muscles are painful. I have lost teeth. I am trying to stay happy and positive and have a very supportive family, though my daughter doesn't quite get my whole disease. Plain and simple, Sjogrens Sucks.
Thank you so much for these videos on Sjogren’s. You are really thorough, most drs don’t understand how systemic Sjogren’s really is. I find I have to explain the disease to many medical professionals.
I had a really severe case of mononucleosis when I was 17. Couldn’t move from the migraine, neck stiffness that never went away, light sensitivity extreme, lasted 3 weeks and I never left the dark room for the whole event. Neurological, Orthopedic, Cardiologist, Immunologist, Rheumatologist, Are the constant companions, and illness has been a way of life for me as long as I can remember.
Thank you for sharing your experience. I can only imagine how hard is for you.Thank you for taking the time to watch my RUclips channel! I appreciate your support and interest in my content. It is always motivating to know that my videos are reaching and resonating with people like you. Thanks again for being a part of my community and supporting my work.
They say mono can be responsible for Lupus and other Autoimmune diseases..I had Mono too at 17 and diagnosed with Lupus 6 yrs later with other auto immune diseases secondary.
I too had mono and had to drop out of college for a year. Later in life I've been diagnosed with Wegners, fibromyalgia, sjoghern's, scoliosis and cervical bones disintegrating. I now have full dental implants as dry mouth led to disease and decay untreatable. My eye doctor sealed my tear ducts in hope of increasing tears.Now I have dry macular degeneration in one eye. My life is mostly just trying to manage things as they develop. Seems like life is full of surprises and not for the faint of heart. 🎉
I have other arthritic diseases. I have no clue what is affecting what anymore. I'm so tired, and with no support, that sadly, I'm starting to not care.
Thank you so much for these videos. I have been living with Sjogren's for the past 18 years. Last year, I had a bout of COVID, and since then, I have noticed a pronounced decline in my mental and emotional status. I was beginning to think I was crazy, but your video has helped me to understand my disease so much more. Thank you again, and God bless you in the work you do for others.
Oh my gosh I cannot tell you how much this resonates with me same thing has happened to me. I was diagnosed with Sjogren’s in 2005 and last fall after Covid I feel like I have declined cognitively emotionally I absolutely 100% identify with yes and I’m so sorry that happened to you as well. There’s got to be something very valid to this especially following Covid. Perhaps it’s long Covid but I think because of the nature of Sjogrens and the significance of the effects on cognitive ability and the nervous system/emotional regulation it’s exacerbated following Covid. I can tell you that there are days that I cannot even function even more so than normally I feel horrible and no one seems to understand this. No one really gets Sjogren’s syndrome, who is in my life, and there are not that many people in my life trust me, but I have begged to see a neurologist, but I’m not even sure that that would do any good or validate anything further I’m so sick of people negating the seriousness of this disease I’m grateful to have a space to be able to express myself and be validated and believed this disease is horrific
The trouble is that most rheumatologists, and virtually all neurologists, have no knowledge or understanding of the CNS factors in Sjogrens. Even these highly specialised medical professionals dismiss it as sicca symptoms only. Being seronegative, I cannot convince a rheumatologist in my country to even begin to treat me. They won't even do a lip biopsy (not that it always helps). Successive interviews with neurologists have failed to interest them in the very first symptom of Sjogrens I experienced - sleep hyperventilation/tachypnea. A condition only previously documented in a single paper, with no connection to Sjogrens at all, which left me completely exhausted with no recourse to rest. I still can't get a brain scan for love nor money. I have bullied my sleep doctors into providing me with a bipap, and worked out the optimal settings myself since no defaults exist for this particular symptom - but from the Sjogren's forums I know there are many more people out there with exactly the same experience but none of the understanding they need to fight doctors on this. I appreciate you putting this information out there - it is something Sjogren's patients understand very intuitively - however there is a very, very long way to go for our doctors to appreciate it.
I feel your frustration. My lip biopsy was painful and came back negative. A year later my blood tests showed I was positive for Sjogrens. It took ten years from my first symptoms to getting a diagnose of Sjogrens. I often bring the most recent copy of "The Sjogrens Book" by Daniel J. Wallace, MD, to my doctors' appointments.
Interesting. Have you gone through actual sleep study? If you were DX with tachypnea did you have repeat with Etco2 monitoring? I would imagine that you may have improvement with bipap and higher delta but Avap is what is recommended in situations like that.
I've had several sleep studies, two home tests and a single hospital based study. I am put down as 'complex sleep apnea', even though my first study showed no apnea (have since gained a lot of weight and now do have apnea, however I have never experienced it naturally as I was always sleeping with a CPAP or BiPAP) as what I have - sleep-related neurogenic tachypnea is not in the sleep medicine books. I had to beg/cry for a CPAP because of my lack of apnea, but for some reason they gave in and let me have one. I was then able to use the results of several years worth of CPAP stats to demonstrate the constant tachypnea from point of sleep, at which point I was (finally) given a BiPAP. Since it is so far from standard to hyperventilate while sleeping, there are no standard settings for it. So I did all the settings by experimentation. My sleep consultant tried to refer me to neurology, but they didn't want to know. Luckily the BiPAP really helped, even if it's not 100% ideal and I may never find a doctor willing to connect the dots. Goodness knows, rheumatologists don't care about disordered breathing! Never be rare. Unless you happen to find that one doctor who is fixated on your condition, you'll never get anywhere without pushing yourself there.
Pretty sure I have this. I'm 40 and have been having symptoms for like 10 years. Super dry eyes, cervical stenosis, severe headaches several times a month, dizziness, foggy brain, and crazy fatigue. Doctors blow off my symptoms and say my blood work is fine and I'm too young to worry. Intermittent fasting and eating clean seems to help the symptoms but it's hard to commit to a life of IF. 😮💨
You are absolutely NOT to young to worry. I had a heart attack when I was 37 years old from undiagnosed Rheumatoid Arthritis. Keep pushing for then to test you. Don't give up. You know when something is wrong, they don't!
Thank you for sharing your experience with lupus and Sjogren's, and for your resilience in living with these conditions for so many years. It's not easy to manage chronic illnesses, but it sounds like you've found ways to cope and maintain a positive outlook. Thank you for sharing your story, and for being an inspiration to others living with chronic illness.
I am so fortunate to have found your videos. I thank you from the epitome of my soul that you are taking your time to create these videos and information so at least mentally I can have a name put on my condition to tell others why I can't do things with or for them at times. I pray for blessings to you and your family for you creating these.
I've learned so much from Dr. Girnita's videos, It really helps me try to be an advocate for my own healthcare with the autoimmune diseases I have. She is showing how what I had 23 years ago all correlates with Sjogren's, it helps to stimulate my thought process to help progress my care when it's not progressing. PACNS survivor here.
Was diagnosed about a year ago. I have a wonderful kidney specialist who recommended my new rheumatologist to who diagnosed me with sjogren's, the first appointment with her. So blessed to have her. Had lupus in remission, kidney failure, had kidney transplant, had rashes, but at the moment just dealing with dry mouth,dry eyes and some fatigue, arthritis, back pains. I started a WHOLE FOOD PLANT BASE diet and it's helping me. I can now walk thirty minutes 4 times a week. Some stretches physical therapy exercises at home. The lord JESUS lead me to this WHOLE FOOD PLANT BASE diet l think it has truly helped me. Never give up.
Wow! Thank you for sharing your knowledge. It is the first time that I have seen and hence understood my experience of Sjogrens that presents as MS and why several doctors felt I had MS and not Sjogrens. I hope that your knowledge can be shared with the medical community at large, as so many patients feel unheard with their often debilitating symptoms being put down to menopause or hysteria. Thank you.
Same aa me. Was diagnosed with MS at first. Then, found out on 1 test only that it was Sjogrens. My lungs are a mess but Drs say not the Sjogrens type of damage. Makes no sense. They tell me it's ABPA & eosinophilic asthma. I've also had chronic pain for 32 years with nothing for that!
I was diagnosed with lupus and shortens thirty years ago and have always been told there's not much to be done with it . I have learned so Much this last half hour . I am on no medication to help me with these diseases . I have neuropathy so bad I have no feeling in my feet and legs and fall every day . This is no way to have to live . My Rheumatologist told me twelve years ago I didn't have to come back because the Lupus is in remission and there is nothing they can do for Sjogrens . I guess it is time to look for a good Rheumatologist !!!!
Too many Drs pooh pooh sjogrens like it's a nothing burger they should be ashamed of themselves . My retina opthalmologist specialist surgeon and dentist know more about sjogrens tham my primary care doctor and Rheumatologist, It's disgraceful and us patients suffer terribly.
I’m in gb the treatment is so bad,I’ve just managed to get a phone appointment for March. It’s like being not believed and swept under the carpet,thank you for the videos i learned more from you than any of the Doctors
Thank you so much for your videos and sjogrens information. I have been diagnosed for the past 5years but from the symptoms I know I’ve had it longer. No dr has been able to explain my sickness to me and I have just been silently painfully suffering due to lack of knowledge. This video and your others have helped me realize I’m not crazy like they say. My body has been declining I can feel it but they just say they don’t know so obviously I’m making it up ugh. Something is really going on and has gotten worst since I had COVID in 2021. I hope everyone feels heard by this video as well, and sending loving healing vibes
My update. Well I am coming up to my anniversary and everything started with sjogrens. I am posting this cause I want you to know that this disease has opened the door to other things that include pulmonary heart disease. My GERD has worsen, my rumatoid arthritis disease has worsen, my lungs today that my doctor said my lungs are gone and need a lung transplant but turned it down. My thyroid has to have a biopsy and my kidneys are starting to get affected. They found h polori bacteria in my stomach. And so much more. So I am telling you to take care of yourself, you don't want this pain and I am letting you know that your door is open to other things. So be safe. You don't want this. Don't ignore it and don't think you will be ok. I have Arkansas social security making my stress hard cause they took away my disability, so I got a lot of fighting. Stay strong, don't be walked on and accept wrong doing and fight . I am not looking for sympathy, I am showing you that how to be a fighter. You got this . Stay strong soldiers.
I doubt that you will see this but has anyone with Shogun syndrome tried using low dose naltrexone (LDN) for their autoimmune diseases? It it is a compounded prescription medication that helps your body regain homostasis, and is cheap. But you cannot take opioids with it because it blocks the opioid receptors. It was originally used in high doses to treat those with opioid addiction.
Are you a carnivore? I have ALS and have been on the diet 2 years. It's helped my lungs but not the face, throat or right side or nerves. Mind you I cheat a fair bit and thinking of going 100% finally, even though a neuruologist surgeon states there is no cure.
My current rheumatologist poo-pooed my Sjogren's syndrome even though I have chronic symptoms. I am additionally bipolar, so it can be difficult to distinguish the symptoms. During the worst of it, I was diagnosed with idiopathic intracranial hypertension with the subsequent spinal taps to see how elevated my CSF was. I had severe eye involvement & loss of vision which preceded the spinal taps. My vision has since improved, yet I have severe Sicca symptoms. I now see a neurologist for chronic migraines, & they have not responded well to various treatments: Botox injections, many different oral meds, Emgality injections & now I am currently undergoing the infusion. The infusion was somewhat effective, yet it lasted no where near the three months for which it is prescribed. My memory is greatly affected as is my cognitive ability. I used to be intelligent & on top of things, no longer. I am now known to be spacy & a little ditzy. My intention is to switch rheumatologists as I need a physician much more educated on my symptoms & on Sjogren's syndrome in general.
Not sure if this will help you, but it did wonders for my MIL with Sjorgrens...B1(Thiamine) therapy with B6 and wormwood extract. Treatment/therapy was administered at a Alternative Clinic in Tijuana Mexico. They are starting/doing a Stem Cell therapy for Sjorgens using your own stem cells,btw. Personally when she started the Thiamine Therapy (mega-doses) she did a 180 in most of her symptoms,(minor dry eye and mouth symptoms still) but neuropathy,temporal headaches,fatigue,muscle weakness,dizziness,blurred vision etc etc all gone. There is a doctor here on yt that does Thiamine treatment "how to videos" (No Clinic needed) Btw-Her Thiamine and B6 levels were in "normal ranges" per western medical protocol. But more and more info and research showing Thiamine deficiency is more prevalent than expected and correlations with MS, Bipolar,Anxiety, MG and gut health and/or IBS. And ALS also. Oh almost forgot they also did mega-dosing of Magnesium. She's 85 now and is in better shape and condition now than when she was in her mid 50's and 60's. She was so bad for so long that "we" had an outdoor electric stair chair installed, a complete remodel on her kitchen and bathrooms to accommodate a wheelchair and electric shower chair etc. ..She was officially diagnosed in her 40s, was fully disabled and walker/wheelchair assisted from 50s until age 72, did Mexico Clinic therapy(s), 6-8mos later(maybe less) all symptoms gone! NO more walker or wheelchair. Shes 85 and going strong and we removed outside electric stair chair.... Only OTC vitamins and diet chande now.! Good luck ALL 🙏 Almost forgot, Clinic also cut out all of her sugars and basically had her on a Keto/Carnivore style diet way back then. She still pretty much has gone completely Carnivore on her own instead of Keto, she says she feels so much better on carnivore and only 1-2 meals a day. She has no problem keeping to such a "diet" bc her health is 100% better. She was basically almost completely bed-fast with daily home health care...she started a slow decline to a cane, then walker, stopped driving,then stair chair, then wheelchair then bed-fast and daily home health, all the while seeing every specialist across the US,doing every test possible and taking multiple medications,infusions,injections, physical therapy, for 30plus yrs and only declined over those years, a doctor she was seeing in Colorado referred her to the Clinic in Mexico bc she was on her" last days" my FIL would have flown her to the moon if he thought it would help her. They met at 16 and 17 married a yr later. He was an Electrical Engineer with a masters in environmental science and she had a BA in Industrial Design and an Arctitectual Science. He has since past but they did have 8 wonderful yrs together after her treatment @ age 72.They got to travel the world and checked off quite a "bucket list" something they had given up on. I hope anyone dealing with a AI disorders can have the same outcome. Please everyone do a little research on above therapys and adjust your diets and see what happens. If anything like my MIL it could'nt have gotten any worse.....But NOW it's like she was "reborn" at 72 with just a diet change and vitamins and oh yeah a "parasite cleans" all these little things I've forgotten the Clinic did. Also there are US and Canadian Clinics that do this type of treatments not just Mexico,Turkey or Saudi Arabia but also yt videos about these therapys.We didn't have any videos 15 plus yrs ago to refer to.😢.....Again good luck ALL, I wish you the best.
I’m a masters prepared nurse and I self diagnosed myself with Sjogrens. I had the punctual plugs inserted into my eye ducts. 6 months later I was medically diagnosed with Sjogrens. I’ve had GI surgery and recently diagnosed with ILD ( interstitial lung disease). I’m feeling a cognitive decline.
Thank you for your videos. I was diagnosed with Sjogren's about 3 years ago, my ANA Screen was positive. What bothers me the most is the neuropathy in my legs. Started with a new Rheumatologist and I'm hoping she can help with the leg pain.
Thank you for taking the time to watch my video and leave a comment. I really appreciate it! It means a lot to me that you found the content helpful and enjoyed it. If you have any questions or suggestions for future videos, please don't hesitate to let me know. I'm always looking for ways to improve my content and provide value to my viewers. Thanks again for your support!
Thank you sooo much...l am an orthopaedic surgeon and this is the FIRST time l have been reading a complete chapter on sogren disease...very interesting..and helpful...l am sending it to my daughter Who is very INTERESTED IN NEUROLOGY AND INTERNAL MÉDECINE. GOD BLESS YOU..
I was hospitalized at 2 Weeks old for bacterial meningitis. I wasn’t expected to survive. I’m certain I’ve had Sjogren’s my entire life stemming from that.
@@maggiestubbs9731 as much as it sucks, I actually feel worse for people who were previously healthy and then develop autoimmune diseases. We have only known this life- it makes it easier to accept. Plus, we have had a lifetime of figuring out how to navigate life while dealing with chronic illness.
I was diagnosed 2 months ago with sjogren syndrome but I sofer almost 4 years, last year was the worst. I have poly neuropathy, the neurologist told me and after a lot of tests rheumatologist diagnosed me with sjogren, my SSA was high. Thank you for the video .🙏
Absolutely informative & fascinating video…learned many significant issues that I wasn’t aware of i.e., 24:06 thought it only effected my eyes & mouth. I strongly believe I have it. Thanks for enlightening me❗️
Oh my gosh, you have just answered a hundred questions for me. I am struggling so hard and desperately need a doctor to help me. I have seronegative RA, and I know that I am very sick with seronegative Sjogren's. I have no saliva, no tears, horrible IBS, I'm in an electric wheelchair because my legs don't work, chronic migraines, chronic back issues/pain, ME/CFS, fibromyalgia, fatigue, exhaustion, dry eye, mouth sores, burning lower lip, Raynaud's, thrush, more. I have no transportation to the right doctors. I was very anemic last Spring and my iron is going down again. I wonder how many people are like this? Thank you for this video!
@@rheumatologistoncall Thank you! My mother had RA, my grandmother had Lupus, and my daughter has an autoimmune disease they can't identify. I guess it's no surprise one more is emerging.
Hi, do you have heart palpitations and heart thumping (heart beating hard) with low iron/anemia? I start to have frequent heart palpitations, severe lightheaded, cold hands, cold feet since i had heavy menses in november last year. I just diagnosed with sjogrens syndrome in november via blood test (positive SSA-RO and positive RO-52).
@@izreenfarah8689 I have heart palps but also take meds for a prolapsed mitral valve. I was anemic last year and had iron infusions. I'm past menses but had very heavy in my time and had to have a hysterectomy. I am seronegative RA and Sjogren's and Raynaud's.
I was diagnosed with Fibromyalgia 15 years ago then MS 13years ago, I have severe dryness in my eyes, nose, mouth and in my vagina, my skin is changing, I have old ladies skin, it's dry and thin, I have MRI's and my MS is stable, been on Ocrevus for 6 years, I get painful, swollen joints, and thinning of my hair, I do have nodules all over my thyroid, they were tested and are benign.
I am 35 years old and have had Sjogren's syndrome for the past 12 years. I lost my medical assistance four years ago, and sometimes I wonder how my future will be. Since my last appointment, I have experienced new symptoms such as fatigue, muscular, and joint pain. I have no idea what to do. In Brazil, this disease is completely neglected, but we keep going. Currently, I am in the US for work and will stay here for another month. I have been taking advantage of the many products available here that cannot be found in Brazil. I feel that Sjogren's syndrome is taken more seriously here. I wish I could apply for the studies they are conducting, but since I won't be staying, I cannot participate.
I live in NYC. AND also don’t get any help. Was prescribed with a strong painkillers, antidepressant’s, and few more not important meds… So the things with autoimmune diseases are very bad everywhere. Unless, you belong to the upper echelon of society and very wealthy…
I were diagnosed 2015 and my arthritis osteoarthritis doctors were great. Dry mouth, eyes and skin is very hard to treat. Using high end eye drops and taking medication for it. Having sojourn syndrome takes a lot of work and includes dry mouth.
Check out LDN research Trust on RUclips . LDN is effective in sjogrens . (Low dose naltrexone) and many more chronic, debilitating diseases. It’s a game changer .
I consistently experience a Sjogen's flare - temperature, dryness, joint muscle and spine pain - 10 - 14 days after a gastritis 'attack' (maybe with liver involvement, difficult to tell). Just mentioning in case it resonates with others. Thank you doctor for your helpful videos. x
My blood test for it came back negative but I have dry eyes (last year my eyes teared so much I could barely see to drive and was constantly wiping them) had a constant low back ache, fevers, fatigue difficulty, swallowing knee problems walking up and down stairs. Yet my Primary Physician doesn’t agree I have it. Thankfully my husband’s a Dr. MD, PhD and we (I, former Library worker) researched every weekend and symptoms kept coming back to Sjogren’s. Now I have itchy spots in my palms and bumps on my wrists. An elbow and eyelids. My condescending dermatologist wanted to punch out a section in one hand. I said no. Stitches are highly needed after and my palm already hurts especially when the brown patches spread. My Primary has finally agreed to refer me to a Rheumatologist. I’ve been waiting 2 weeks now and finally found several in my area and called him names cause they only take referrals. Been fighting depression constant brain fog.
No so much palpitation but more like slight tremors. I was put on Methatrexate because I was also positive for rheumatoid. And also Pregabalin for the nerve pain and numbness. After 4 or 5 weeks on those medications the heart tremors are a lot less frequent, nearly gone all together.
I also had painful legs , and numbness in one thigh and both feet, sometimes swellings in my arms, tingling and staring pins in my legs and feet especially at night. Severe tiredness like someone turned of all my enger switch. All the symptoms have eased, some more than others, since taking the meds
Thank you you very much Dr. Girnita you seem to be a very dedicated woman “ l am finally now at almost 75 years old being tested for Sjogrens l have been suffering from this disease for over 20 years , l wish l could of had someone like you to tell my story too ,finally my PC Dr sent me to a Spine Doctor l explain my symptoms he then ordered blood test for the Sjogrens also l have severe carpal tunnel in both hands nerve study and EMG been done , you are so nice too thank you again and God Bless You 🙏🙏💕
When I was in my early 40's I started getting symptoms that mimicked MS and then it went to subtle Parkinson's symptoms Then I got hit with severe pain and swelling in my feet and knees. My Rheum ordered a lip biopsy per my request to see if I had Sjogren's as nothing was showing up in my blood work. I had a very high count of ?? in the microscope So I was diagnosed with primary Sjogren's. This disease is far from dryness in your mouth,eyes,nose. I am now diagnosed with Parkinson's and Lewy Body dementia at age 58
Prior to seeing this video and especially comments, to see how many people out there suffering like myself didn’t make me happy, of course, ( I don’t wish to anyone such an experience; but before I felt kinda lonely ( nobody else could understand what I’m going through). Thank you all
Restasis immediately eased my dry eyes, and it went into remission after a few years. I was just about to file for disability because I could barely drive 5 minutes without eye drops. Sleeping was torture.
Hi Dr. I was diag. with Sjogrens 30 yrs.ago. I was told that I would need a good eye dr and dentist. So far, I have severe dry mouth, which I suck on lozengers/chew gum for dry mouth. I have dry eyes. I use otc tear drops. I drink my daily tea of ginger/tumeric roots/cinnamon stick, adding 3 Tbl sp of Apple Cider Vinegar. 2x a day. I also take Qunol Tumeric 1500, and vitamin D. Still very active at 66. My blood labs were good. I hope to continue my regimen as long as I can. Thank You for your videos.
Wow you're doing OK so far, I have extremely dry mouth, still waiting for blood test results, do u take any medication for dry mouth, to stimulate the salivary glance? Thanks❤
I have problems with understanding accents and have some hearing loss. You speak very clearly and I appreciate that. The closed captioning for your video was very accurate. Some come through on other videos as just nonsense. However, you should check the cc because it often didn't spell Sjogren's correctly, often substituting "children". For your viewers that have hearing loss, it's aways appreciated to have accurate closed captioning.
Wow and thank you! Most thorough and informative of anything about Sjogrens I have ever seen! My daughter found this and sent me the link. I’m willing to take part in the trials and will ask my Neurologist for further info. ❤️🙏🏼❤️🩹
Some of the numbers of my blood test over 2 000 times higher than normal…Also: I used to have tachycardia and slightly elevated temperature; lately just the opposite started happening: now often I get bradycardia and my temperature is slightly lower than normal…? Anyone knows anything about that?..Thxs.
Excellent Information. As a Male it has been a difficult journey as well. Being a veteran under VA care I was Negative lip biopsy but have everything BUT Antibodies and VA won't diagnose Ss without blood confirmation. They do a good job treating all my symptoms.
I was diagnosed with Jsogrens and never heard of it , but all the symptoms match my body , I work part time , but the doctor is going to make me work accommodations , the headaches , the back and neck pain are to die for , the meds makes me sleepy and my eyes and mouth are always dry. I’m glad I can get educated on this , I’m glad my doctor was able to send me to an RA and that’s how I was test for ANA and came back positive . I’m just scared of the dementia part.
I am suffering from dry mouth , tooth problem, dry eyes for last 3 years but. Got no solution, i thought its manopause symptoms, thanks for sharing, Now my one eye is diagnosed with wet macular degeneration, my tounge cuts also with dryness
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I have Ehler Danlos Syndrome and I’m pretty sure I also have sjogren’s. I have almost all the symptoms you mentioned. I need to find a doctor that will test me for it.
Here is my list of diagnoses: EDS, SLE, Scleroderma, Sjogrens, RA, OA, Hashimotos Thyroiditis, temporal arteritis, cranial nerve damage with CNS involvement, GERD, systemic yeast, etc. I've had COVID three times. The effects of these combined health challenges is almost overwhelming. I would rather have one year of feeling great, than how sick I've been and feel for my entire 67 years of life. I look 100 percent healthy, and try to behave that way. This too is an enormous challenge. However, I'm thankful to not look as sick as I am.
Maybe look into carnivore diet. Masses of people have had huge success with a lot of the health issues you have. I myself am 70% meat and believe I was pre diabetic or diabetic before starting. I had massive inflammation and chronic pain. Also my thyroid was large, hard, painful. All gone in 5 weeks.
What bugs me about all of these autoimmune diseases they’ve come up with…it seems they’re only interested in naming the disease, compiling symptoms, and treating symptoms only…pain relief is a major factor in this phenomenon driving patients to believe that is treating the disease…when are scientists going to actually start looking for the cause of this type of disease beyond calling it autoimmune….I would think theyd steer away from naming it all autoimmune because it’s becoming quite clear what causes autoimmune type responses…an enormous amount of poison being introduced into the body all at once…extremely toxic chemicals cause these types of responses…im going to leave this an open ended comment for a reason……lol……..
I believe that these syndromes/diseases are caused by tick borne infections that bombard us multiple infections from one biting species, ticks being one of them. If one has a weaker immune system than the infections slowly eat us from within, various tissues including joints, tendons, bone, organs, causing all these conditions there has to be a cause, yet they don't care to find it bc we make the medical system billions if they only treat symptoms. It's an evil thing to force patients into trying to find the cause of their multiple disorders.
I truly believe all autoimmune diseases are from the chemicals we put in our bodies from prescriptions given by our doctors. it saddens me. Doctors are quick to write a prescription because a medical guide from Big Pharma on their laptop says it is the only way to treat the patient. Doctors know nothing about the medicines. They only know what pharmaceutical reps tell them. And we want relief so we go along with it. Right now I have a huge break out of Purpura on my arms. It has been a year. My doctor can’t help me. A hematologist could not help. They referred me to a nephrologist who couldn’t help and told me to see a dermatologist. My cardiologist wonders if its my heart medicine. I’m scared not to take it as it is for Afib. I love this video and hope there are more like it. I sometimes feel like I’m dying because i get depressed.
I was diagnosed with primary sjogrens in 2023. I had the brain issues since I was 8 yrs old. The doctors just kept saying it was a hormonal issue with the migraines. No one ever pointed out my depression which I suffered from since that age as well.
I was diagnosed with Sjogren's after having a stroke and multiple TIAs where no obvious cause was found. While trying to find the cause, my neurologist saw evidence in lab tests, scans, and symptom history that pointed towards cerebral/CNS vasculitis. He referred me to a rheumatologist for evaluation, expecting that I would most likely be diagnosed with Lupus. But I was diagnosed with Sjogren's and Rheumatoid Arthritis instead.
My 11 year old have an autoimmune disease that caused him unable to walk since January called HSP . but after using herbs medicine he can walk now God bless you Dr imenherbal on RUclips 💯
Thank you for this detailed information. I am a patient with ssa and ssb positive. Peripheral sensory and motor neuropathy are diagnosed. Used 4 cycles of Retuximab and two cycles of ivig. Symptoms are gradually worsening.
check into high doses of vitamin d also have a doctor check your level first because it can be toxic so keep an eye on the level also watch what foods make you worse even toothepaste sorbitol high fruitcose ect
I have Sjogrens, Lupus and MCTD. I have had my lumbar spine fused and recently my cervical spine fused. I get rituxan infusions and also use Cellcept and plaquenil. My daughter was recently diagnosed with Sjogrens. Thank you for your videos.
I was diagnosed with Sjogren’s syndrome, apparently secondary to SLE in 2013. I was 44 years old at the time. I had an episode back in 2008 where I had a sudden onset of double vision and then about two weeks later developed paralysis in the right side of my face. I believe they called it cranial nerve five and seven palsy because they said bells palsy does not accompany double vision. I do have positive ANA, dsDNA, SSA and SSB antibodies. This year I was hospitalized for severe fatigue and muscle weakness and ptosis in my right eye along with another episode of double vision. The Neurologist in the hospital gave me Mestinon and the double vision went away and the weakness felt less severe, and it was then he diagnosed me with myasthenia gravis. I never knew until I just watched your video that people with Sjogren’s can develop myasthenia gravis. Can you please tell me how it’s correlated and why this happens?
Many autoimmune diseases tend to come together.. Sorry that you are going through this....Thank you for your continued support and for watching my videos. Your presence means the world to me, and I appreciate your engagement and loyalty. Stay tuned for more exciting content!
@@Molly-e1xyes!! Number 1: Get the toxic people out of your life. Try your best to manage stress and prioritize self care. Eat healthy, the AIP diet helps people but it very restrictive.
I have 3 that I'm aware of. Sarcoidosis,which cardiologist thinks is in my heart, sjogrens, with a submandibular tumor of the salivary gland and polyarthritis that causes crippling pain I'm my back. There are no answers. I'm thoughtnof as an interernist's learning project.
When I had blood test done, originally, my gp took long to let me know the outcome. He said I had an autoimmune disease, he thought it was Sjogrens. Totally disinterested.As if it was nothing. I looked in google.Then I want to an internist. I had all symptoms of lupus. Pain mainly for being photosensitive. Nobody cares. I started taking omega3, calsium mag, because of tankin anti inflammatory caps often.now 30 y later..my heart, nervous system, Arthritis an depression, fatigue are bearable.Lost my first, second husbands, my 2 best friends, and my daughter, all I loved dearly.My pets are my happiness, and my faith are worth more than gold.
Thank you, Dr. Girnita, for creating such an informative and concise video! My mother was recently diagnosed with Sjogren's Syndrome, and in searching for info about it, I came across your channel. That said, I was diagnosed with Multiple Sclerosis in 2012 (but had it since at least July 1997, the time of a severe optic neuritis attack) My MS case is ... not textbook at all (for example, no detection of MS-specific O-bands in the spinal fluid), and I never realized until seeing your video that Sjogren's Syndrome could have such extensive CNS involvement. A few questions: Can Sjogren's Syndrome cause: (1) the "Dawson finger" morphology of brain lesions as seen on MRIs? "Dawson finger" is allegedly MS-specific, but I'm wondering if this morphology extends to brain lesions see in Sjogren's Syndrome patients?; (2) heat-sensitive symptoms? For example, exposure to a hot shower or hot weather causes old symptoms to temporarily emerge? (3) a sensation of a tightening band around one's chest, particularly when exercising or in other situations when the core body temperature is elevated? (The MS community call this sensation the "MS-hug", but I'm wondering now, how specific to MS is this symptom? Do Sjogren's patients also experience it?) (4) foot drop? Thanks for any feedback you can provide. I'm just curious regarding how MS-specific these symptoms actually are!
I'm struggling with this and Hydroxycloroquin I can't take because I get severe diarrhea. I'm 55 years old and this came on after a very stressful divorce and neck surgery. They also think my daughter has now and she is 35. I'm miserable. The flares are worse with stress, lack of sleep, and allergies. The pain in my back and legs are so bad that it keeps me up at night even though I'm on pain medication. I'm allergic to Nsaids. My jaw hurts because of lack of saliva and my eyes so dry and painful. Mood changes yes because my husband can tell you. Headaches the only thing that works is Nurtec for that. Depression because you just want to give up from feeling so miserable. You just want to rip your head off. I have sweating on and off my body heats up like an oven out of nowhere. My hands and feet freeze. Fatigue is awful. The pain getting unbearable.
I'm so sorry to hear about all the pain and discomfort you're going through. It sounds incredibly challenging. Hang in there, and I hope you find some relief soon.
I am absolutely in shock right now coming across this video!!! WOW!! I relate to SO much of this as far as the - dryness -reynauds - arthritis - pain (like everywhere lol) - horrible sensory issues - unexplained Brain MRI abnormalities (My results: There are a few scattered foci of T2 prolongation throughout the subcortical white matter, Subtle foci of FLAIR signal abnormality in the subcortical and periventricular white matter may represent early presentation of a demyelinating process.) and being told I may have MS but not meeting the criteria of O-bands, worsening lesion, etc... - AND the spinal cord T2 hypersensitivities (my results: Moderate to large left paracentral disc herniation/extrusion at C6-C7 is minimally effacing the cervical spinal cord. This is likely impinging on the region of the C7 nerve root. Subtle T2 signal abnormalities on inversion recovery images in the thoracic spinal cord are likely artifactual. A repeat follow-up examination in 1-2 months with and without contrast may be done.). They just told me as far as the spine T2 abnormality that it was likely artifactual and not to worry about repeating it... I switched up my diet big time over the past year and I seemed to get my symptoms under control for the most part, but then I came down with a stomach bug and it caused a big flare up (exactly like a year ago when this all started up again!). Just all so strange because I started having issues at 24 that lasted a year then went away for 10 years (started at 34 and now having symptoms again at 35). It's all just so frustrating not being able to get any answers even with a positive ANA SSA speckled!!! I will definitely be showing this to my rheumatologist.... THANK YOU for your incredible content!! Definitely subscribed and will be diving into your other videos as well! ❤
My niece was recently diagnosed she has an extremely rare presentation she's been having constant strokes before and after diagnosis there's only one other person in the world that presented like this with multiple strokes usually if you have a stroke from it you only have one and to add my sister died three years ago her mom from multiple strokes that they thought they had under control but they didn't and she passed in her sleep so that's scary right now they're trying to figure out how to stop The strokes we've been trying to look up all the information we can but it's so rare they're just kind of throwing everything at it right now
My 11 year old have an autoimmune disease that caused him unable to walk since January called HSP . but after using herbs medicine he can walk now God bless you Dr imenherbal on RUclips 💯
What excellent educational information.Thank you so Much for this i can relate to this as I suffer from this ,it has a detrimental impact on my holistic self throughout my body. My Rheumatologist diagnosed this. I sympathise with you all.. Hope you all find a method to manage this debilitating condition. I mostly struggle daily on a basis I have to take each day as it comes and assess the situation on who my day will be. It's a painful condition. Once again thank you for clear understanding.
In the UK if you refuse the lip biopsy for diagnosis, you are just assumed not to have the disease and are left to get on with it, alone. I saw a rheumatologist in 2014 and she suspected Sjogrens but because I refused the lip biopsy, I haven't been seen since and over the past 9 years my symptoms have gotten much worse. Just because you don't have a diagnosis, it doesn't mean you don't have the illness.
I had a bad attack recently and I have v strange sensations on one side of my head and fatigue. The problem is My GP under reacts to my symptoms. I'm put on waiting lists even when I feel like I should be admitted and assessed. How do you deal with this? When doctors under react to significant symptoms? Thank you 💕
My 11 year old have an autoimmune disease that caused him unable to walk since January called HSP . but after using herbs medicine he can walk now God bless you Dr imenherbal on RUclips 💯
I was diagnosed with this Sjogren's Disorder years ago and famous tennis champ Venus Williams has it too.I also have a positive lab test for genetic celiac disease, the most common form HLA 2 or 8 I can't remember which;HLA stands for Human Leukocyte Antigen.I'm not on any medication,I just take vitamin supplements and eat what makes me feel good,but I've been crappy sick for years ;I think I have other Autoimmune disorders as well,you can have several autoimmune disorders at once!
I have been having horrible back pain (sciatica) for months. PT is not helping. Also having daily headaches. I have to get back to taking my 400 mg of Hydrochloriquine. Very painful.
As a nurse I thank you for this very informative video. I’m currently being worked up for Sjogrens. When it comes to the neurological involvement, could focal dystonia fit into this? The dystonia affects my hands.
I developed temporal lope epilepsy with simple and partial complex seizures as the presenting symptoms at diagnosis with incomplete lupus. I also had severe anxiety and psychosis. The psychiatric symptoms went away after a year and haven't returned. The sicca symptoms and SS diagnosis didn't happen until 3 years later. To this day i only have a positive ANA, SSA and frequently low C3. I never developed the indicators of more severe lupus like dsdna or smith antibodies or complete SLE diagnosis.
It sounds like you've been through a lot, but I'm glad to hear that the psychiatric symptoms have improved and the SS diagnosis came later. Stay strong and keep taking care of yourself!
I have many of these symptoms. I am Hashimotos Hypothyroid since I was 22. I am now a few months from 64. About 4 years ago, I started having symptoms of dry eyes and dry mouth and arthritis. Tested for Sjogrens or Rheumatoid Arthritis antibodies which came out negative. Two years ago, I had to have cervical spinal fusion due to stenosis. A recent MRI indicates more spine issues, including stenosis, from my L2 to S1 region. As of today my eye symptoms are much worse. Dry Mouth is more prominent. Joint pain all over and definite signs of arthritis in my hands and feet. There are days where I am so tired and my brain just doesn't seem to want to work well. Everything on those days seems muddy. Things are getting much worse. The rheumatologist I saw four years ago relied on the antibody readings and since they were negative, didnt think I had Sjogrens. However, what you are saying here appear to match well with my symptoms. It sounds like I might need a spinal tap analysis?
In 1978 I had my right submaxillary salivary gland removed due to three nodes, then in 1984 had a reaction and had erythema nodosum, in 1988 I had meningitis but didn't know what type, but now know it was aseptic meningitis.
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Check out my new video about BEST FOODS FOR SJOGREN's ruclips.net/video/EYaOJckVTSM/видео.html
Thank you.
This Syndrome is gonna kill me.
Too many other diseases to type.
Bless everyone. 😢
@@Stoicism33rd Me too, I am so 😔
@@marjanadidi1261 I feel the same.
I don't think theres any part of me that isn't affected.
@@maxine3587 Mine too, my skin changed 🥺
@@Stoicism33rd I'm with you on that as well.
I got diagnosed 5 years ago and have not had any treatment but been maintained. It has grown bad and brought pulmonary fibrosis,COPD, honeycomb lungs,rheumatoid arthritis. Gerd, and so much more plus now have heart disease. Honestly I have mainly been on my own and now my body is giving up,the mind is strong,my body is going. This disease needs to be educated cause I couldn't tell you how many nurses and even doctors don't know anything about it. I bet I don't finish the year. Stay strong soldiers
Omg that's so sad. I pray you find a Dr treat you
@@jenniferdouglass336 I think it's time to throw in the towel. Thank you so much. Much respect
Please don’t give in to it
@@rubychurch3466 I am not giving up or giving in. I am tired. My obligations are almost done and then I can rest. Thank you.
My 11 year old have an autoimmune disease that caused him unable to walk since January called HSP . but after using herbs medicine he can walk now God bless you Dr imenherbal on RUclips ........ 💯
I totally agree! It’s surprising how many doctors have no knowledge of Sjogren’s . All they usually will know is dry eyes and dry mouth. 😢
Thank you for watching my videos!
@@angelinajimenez5520 exactly it's very frustrating as I've been begging Drs to please investigate more and more being a Quadraplegic and taking several medications that cause dry mouth that is their only answer for me I thank you Dr for educating ... I wish my Drs would watch this as well
Omg!! I was a nurse for 50 years (25 years as a nurse practitioner) and have found out more about this disease from this video than I ever had before! Thanks!
Thank you for watching my videos!
Thanks for serving others. It’s a very meaningful life of service.
I do wish to say that it’s so sad there’s a severe lack of information on this diagnosis by many (possibly most) medical professionals.
Doctors at hospitals are only in business to make money they’re not actually trying to help anyone Dr. Berg actually wants to help people it doesn’t care about money
o⁹9oo9o9oooo
@@Mary10538what does that mean?
Prayers for people with sjogrens on this site. I also have sjogrens, fibromyalgia, degenerative disk disease at the base of my spine & osteoarthritis.
Sending positive thoughts and prayers your way. Stay strong!
Wow we all have the same all we could do is stay very strong 💪 as much as we could ever one here we could have each others back and our lord
I too have Sjogrens, Lupus, and osteoarthritis.i have had 56 surgeries from abdominal complications, ive had so many complications but i am still here and for that i am so thankful and grateful to GOD
Same
@@maryjogreen1706 Prayers for you . Have a good week.
Thank goodness for a doctor who recognises neurological disorders in Sjogren's!
Glad it was helpful! Thank you for watching my videos, please share them with others!
Some neurological issues are being found to be caused by serious toxic overload of many contaminates from pesticides, herbicides and such. Round up is a major world wide problem. Causes major neurological problems along with others that are supposed to be banned.
Average age of onset is 40-60 years...I got it when I was 19 and I have learned more about this disease from this channel than from my doctors in the last 16 years! Thank you so much!
Thank you for sharing your experience. I can only imagine how hard is for you.Thank you for taking the time to watch my RUclips channel! I appreciate your support and interest in my content. It is always motivating to know that my videos are reaching and resonating with people like you.
Thanks again for being a part of my community and supporting my work.
How you dealing with it ? I found when I was 21 I'm struggling
Weird. I started with symptoms when I was 19 years old... It's ruined my life. I'm 54 now and for all time I have battled severe pain only in my feet... Only recently I was told this is probably what's causing my pain... I look forward to dying .. it can't come soon enough
@@almahernandez06 .I deal with it because I don't have a choice.. it's cost me every job I ever had.. I lose every place I live but I'm still alive which means I keep doing this bullshit ... Mine is a horrible resistance..
But what you didn’t learn, is that your body doesn’t attack itself, it’s mould poisoning
I’ve was diagnosed 25 years ago but continue to be frustrated that it’s not taken serious as a systemic disease. If I say “I have Sjogren’s” Drs say “oh, you have dry eyes and mouth. “
Same
Constantly! I was diagnosed at 27. I’m 55 and eye and mouth issues are the least of my problems.
My best friend died of this and I just couldn't understand how a 48 year old woman could just die from this. I am a nurse educator but never learned anything about this in school. So sad
I have Sjogrens but no treatment whatsoever, very nervous
I'm sorry about your friends ..how can this disease takevger life? Was it lung complications?
I was diagnosed at 35 y.o.Sjogren's too my career, I was an RN in Labor and Delivery for almost 20 years, got diagnosed and 5 years later was on disability. I'm pretty well managed, however I struggle with pain and fatigue every day. I have these bumps under my skin all over that are painful to touch, neuropathy and my feet turn bluish purple when I am sitting, yet no one thinks anything can be done about it. I am told to sit with my feet up most of the time when I can. My muscles are painful. I have lost teeth. I am trying to stay happy and positive and have a very supportive family, though my daughter doesn't quite get my whole disease. Plain and simple, Sjogrens Sucks.
Get á rheumatologist on board
Thank you so much for these videos on Sjogren’s. You are really thorough, most drs don’t understand how systemic Sjogren’s really is. I find I have to explain the disease to many medical professionals.
Thank you for watching! I am glad it is so helpful!
Thank you for watching! I am glad it is so helpful!
I had a really severe case of mononucleosis when I was 17. Couldn’t move from the migraine, neck stiffness that never went away, light sensitivity extreme, lasted 3 weeks and I never left the dark room for the whole event.
Neurological, Orthopedic,
Cardiologist,
Immunologist,
Rheumatologist,
Are the constant companions, and illness has been a way of life for me as long as I can remember.
Thank you for sharing your experience. I can only imagine how hard is for you.Thank you for taking the time to watch my RUclips channel! I appreciate your support and interest in my content. It is always motivating to know that my videos are reaching and resonating with people like you.
Thanks again for being a part of my community and supporting my work.
They say mono can be responsible for Lupus and other Autoimmune diseases..I had Mono too at 17 and diagnosed with Lupus 6 yrs later with other auto immune diseases secondary.
I too had mono and had to drop out of college for a year. Later in life I've been diagnosed with Wegners, fibromyalgia, sjoghern's, scoliosis and cervical bones disintegrating. I now have full dental implants as dry mouth led to disease and decay untreatable. My eye doctor sealed my tear ducts in hope of increasing tears.Now I have dry macular degeneration in one eye. My life is mostly just trying to manage things as they develop. Seems like life is full of surprises and not for the faint of heart. 🎉
I hurt so much. It hurts to stand and walk. Everything just hurts.
si eu!
@@rheumatologistoncall Thank you
I have other arthritic diseases. I have no clue what is affecting what anymore. I'm so tired, and with no support, that sadly, I'm starting to not care.
As if anyone believes you.
I am in a SEVERE flare 😞😞😞
Thank you so much for these videos. I have been living with Sjogren's for the past 18 years. Last year, I had a bout of COVID, and since then, I have noticed a pronounced decline in my mental and emotional status. I was beginning to think I was crazy, but your video has helped me to understand my disease so much more. Thank you again, and God bless you in the work you do for others.
Thank you so much! Share with others! It helps people understand their disease better
Are you on an anti inflammatory diet?
Supplements help a lot.
@Revelation 12:1 No, not really. Just found out I have POTS, so I am now on an increased sodium diet.
Oh my gosh I cannot tell you how much this resonates with me same thing has happened to me. I was diagnosed with Sjogren’s in 2005 and last fall after Covid I feel like I have declined cognitively emotionally I absolutely 100% identify with yes and I’m so sorry that happened to you as well. There’s got to be something very valid to this especially following Covid.
Perhaps it’s long Covid but I think because of the nature of Sjogrens and the significance of the effects on cognitive ability and the nervous system/emotional regulation it’s exacerbated following Covid. I can tell you that there are days that I cannot even function even more so than normally I feel horrible and no one seems to understand this. No one really gets Sjogren’s syndrome, who is in my life, and there are not that many people in my life trust me, but I have begged to see a neurologist, but I’m not even sure that that would do any good or validate anything further I’m so sick of people negating the seriousness of this disease I’m grateful to have a space to be able to express myself and be validated and believed this disease is horrific
Man I wish we had Drs like her where I live! I'm going downhill fast!
Me too
Ditto 😢
I agree!!
Yep
The trouble is that most rheumatologists, and virtually all neurologists, have no knowledge or understanding of the CNS factors in Sjogrens. Even these highly specialised medical professionals dismiss it as sicca symptoms only. Being seronegative, I cannot convince a rheumatologist in my country to even begin to treat me. They won't even do a lip biopsy (not that it always helps). Successive interviews with neurologists have failed to interest them in the very first symptom of Sjogrens I experienced - sleep hyperventilation/tachypnea. A condition only previously documented in a single paper, with no connection to Sjogrens at all, which left me completely exhausted with no recourse to rest. I still can't get a brain scan for love nor money. I have bullied my sleep doctors into providing me with a bipap, and worked out the optimal settings myself since no defaults exist for this particular symptom - but from the Sjogren's forums I know there are many more people out there with exactly the same experience but none of the understanding they need to fight doctors on this. I appreciate you putting this information out there - it is something Sjogren's patients understand very intuitively - however there is a very, very long way to go for our doctors to appreciate it.
Thank you for watching, share with others to make people aware!
I feel your frustration. My lip biopsy was painful and came back negative. A year later my blood tests showed I was positive for Sjogrens. It took ten years from my first symptoms to getting a diagnose of Sjogrens. I often bring the most recent copy of "The Sjogrens Book" by Daniel J. Wallace, MD, to my doctors' appointments.
I agree!
Interesting. Have you gone through actual sleep study? If you were DX with tachypnea did you have repeat with Etco2 monitoring? I would imagine that you may have improvement with bipap and higher delta but Avap is what is recommended in situations like that.
I've had several sleep studies, two home tests and a single hospital based study. I am put down as 'complex sleep apnea', even though my first study showed no apnea (have since gained a lot of weight and now do have apnea, however I have never experienced it naturally as I was always sleeping with a CPAP or BiPAP) as what I have - sleep-related neurogenic tachypnea is not in the sleep medicine books.
I had to beg/cry for a CPAP because of my lack of apnea, but for some reason they gave in and let me have one. I was then able to use the results of several years worth of CPAP stats to demonstrate the constant tachypnea from point of sleep, at which point I was (finally) given a BiPAP. Since it is so far from standard to hyperventilate while sleeping, there are no standard settings for it. So I did all the settings by experimentation. My sleep consultant tried to refer me to neurology, but they didn't want to know. Luckily the BiPAP really helped, even if it's not 100% ideal and I may never find a doctor willing to connect the dots. Goodness knows, rheumatologists don't care about disordered breathing!
Never be rare. Unless you happen to find that one doctor who is fixated on your condition, you'll never get anywhere without pushing yourself there.
Pretty sure I have this. I'm 40 and have been having symptoms for like 10 years. Super dry eyes, cervical stenosis, severe headaches several times a month, dizziness, foggy brain, and crazy fatigue. Doctors blow off my symptoms and say my blood work is fine and I'm too young to worry. Intermittent fasting and eating clean seems to help the symptoms but it's hard to commit to a life of IF. 😮💨
thank you for sharing your symptoms1 keep logging the symptoms and discuss with your doctor!
thank you for watching!
I have some good results with using Codliveroil Nac and Glycine!
You are absolutely NOT to young to worry. I had a heart attack when I was 37 years old from undiagnosed Rheumatoid Arthritis. Keep pushing for then to test you. Don't give up. You know when something is wrong, they don't!
Yes VERY FRUSTRATING to get Drs to listen
I was diagnosed with lupus & sjorgrens in my 30 at St Tomas’s in London by dr de Cruz and have struggled ever since but lived each day I am 65
Thank you for sharing your experience with lupus and Sjogren's, and for your resilience in living with these conditions for so many years. It's not easy to manage chronic illnesses, but it sounds like you've found ways to cope and maintain a positive outlook.
Thank you for sharing your story, and for being an inspiration to others living with chronic illness.
❤❤❤
I have sjogrens since 2020 and developed migraines. I am due for a MRI this month. Thank you for this video because I can relate to the CNS.
I am so fortunate to have found your videos. I thank you from the epitome of my soul that you are taking your time to create these videos and information so at least mentally I can have a name put on my condition to tell others why I can't do things with or for them at times. I pray for blessings to you and your family for you creating these.
thank you!
I've learned so much from Dr. Girnita's videos, It really helps me try to be an advocate for my own healthcare with the autoimmune diseases I have. She is showing how what I had 23 years ago all correlates with Sjogren's, it helps to stimulate my thought process to help progress my care when it's not progressing. PACNS survivor here.
Thank you 🙏🏻
Was diagnosed about a year ago. I have a wonderful kidney specialist who recommended my new rheumatologist to who diagnosed me with sjogren's, the first appointment with her. So blessed to have her. Had lupus in remission, kidney failure, had kidney transplant, had rashes, but at the moment just dealing with dry mouth,dry eyes and some fatigue, arthritis, back pains. I started a WHOLE FOOD PLANT BASE diet and it's helping me. I can now walk thirty minutes 4 times a week. Some stretches physical therapy exercises at home. The lord JESUS lead me to this WHOLE FOOD PLANT BASE diet l think it has truly helped me. Never give up.
Tomorrow I am publishing a new video about this topic, watch out! Thank you!
Good luck!
Wow! Thank you for sharing your knowledge. It is the first time that I have seen and hence understood my experience of Sjogrens that presents as MS and why several doctors felt I had MS and not Sjogrens. I hope that your knowledge can be shared with the medical community at large, as so many patients feel unheard with their often debilitating symptoms being put down to menopause or hysteria. Thank you.
thank you for sharing !
All the same as B12 deficiency
Same aa me. Was diagnosed with MS at first. Then, found out on 1 test only that it was Sjogrens. My lungs are a mess but Drs say not the Sjogrens type of damage. Makes no sense. They tell me it's ABPA & eosinophilic asthma. I've also had chronic pain for 32 years with nothing for that!
Sounds the same as FND too
I was diagnosed with lupus and shortens thirty years ago and have always been told there's not much to be done with it .
I have learned so Much this last half hour . I am on no medication to help me with these diseases . I have neuropathy so bad I have no feeling in my feet and legs and fall every day .
This is no way to have to live . My Rheumatologist told me twelve years ago I didn't have to come back because the Lupus is in remission and there is nothing they can do for Sjogrens .
I guess it is time to look for a good Rheumatologist !!!!
There isn’t anything they do for SD unless you have major organ involvement like ILD and then I might get prednisone. That’s it.
Too many Drs pooh pooh sjogrens like it's a nothing burger they should be ashamed of themselves . My retina opthalmologist specialist surgeon and dentist know more about sjogrens tham my primary care doctor and Rheumatologist, It's disgraceful and us patients suffer terribly.
I lost all my teeth to Sjogrens. I have dentures but can't wear them because my mouth and gums are always messed up. Ouch!
I’m in gb the treatment is so bad,I’ve just managed to get a phone appointment for March. It’s like being not believed and swept under the carpet,thank you for the videos i learned more from you than any of the Doctors
Wow! Thank you for watching and kind words
Thank you so much for your videos and sjogrens information. I have been diagnosed for the past 5years but from the symptoms I know I’ve had it longer. No dr has been able to explain my sickness to me and I have just been silently painfully suffering due to lack of knowledge. This video and your others have helped me realize I’m not crazy like they say. My body has been declining I can feel it but they just say they don’t know so obviously I’m making it up ugh. Something is really going on and has gotten worst since I had COVID in 2021. I hope everyone feels heard by this video as well, and sending loving healing vibes
Thank you 🙏🏻
My update.
Well I am coming up to my anniversary and everything started with sjogrens. I am posting this cause I want you to know that this disease has opened the door to other things that include pulmonary heart disease. My GERD has worsen, my rumatoid arthritis disease has worsen, my lungs today that my doctor said my lungs are gone and need a lung transplant but turned it down. My thyroid has to have a biopsy and my kidneys are starting to get affected. They found h polori bacteria in my stomach. And so much more. So I am telling you to take care of yourself, you don't want this pain and I am letting you know that your door is open to other things. So be safe. You don't want this. Don't ignore it and don't think you will be ok. I have Arkansas social security making my stress hard cause they took away my disability, so I got a lot of fighting.
Stay strong, don't be walked on and accept wrong doing and fight .
I am not looking for sympathy, I am showing you that how to be a fighter. You got this . Stay strong soldiers.
Congratulations! Such an empowering story
Where is a center that specializes in treatment? Anywhere in the world? help!
I doubt that you will see this but has anyone with Shogun syndrome tried using low dose naltrexone (LDN) for their autoimmune diseases?
It it is a compounded prescription medication that helps your body regain homostasis, and is cheap.
But you cannot take opioids with it because it blocks the opioid receptors.
It was originally used in high doses to treat those with opioid addiction.
Are you a carnivore? I have ALS and have been on the diet 2 years. It's helped my lungs but not the face, throat or right side or nerves. Mind you I cheat a fair bit and thinking of going 100% finally, even though a neuruologist surgeon states there is no cure.
Bless you, sweetie. What a soldier you are!
My current rheumatologist poo-pooed my Sjogren's syndrome even though I have chronic symptoms.
I am additionally bipolar, so it can be difficult to distinguish the symptoms.
During the worst of it, I was diagnosed with idiopathic intracranial hypertension with the subsequent spinal taps to see how elevated my CSF was. I had severe eye involvement & loss of vision which preceded the spinal taps. My vision has since improved, yet I have severe Sicca symptoms.
I now see a neurologist for chronic migraines, & they have not responded well to various treatments: Botox injections, many different oral meds, Emgality injections & now I am currently undergoing the infusion. The infusion was somewhat effective, yet it lasted no where near the three months for which it is prescribed.
My memory is greatly affected as is my cognitive ability. I used to be intelligent & on top of things, no longer. I am now known to be spacy & a little ditzy.
My intention is to switch rheumatologists as I need a physician much more educated on my symptoms & on Sjogren's syndrome in general.
THANK YOU FOR WATCHING AND LEARNING!
Yes, go to another rheumatologist.
@@LolitaDavidovich934 yes, thank you. I look forward to getting started with someone who is more in tune with Sjogren's syndrome & it's many issues.
I get so tired or pompous specialists like that. Fire that doc and get another !
Not sure if this will help you, but it did wonders for my MIL with Sjorgrens...B1(Thiamine) therapy with B6 and wormwood extract. Treatment/therapy was administered at a Alternative Clinic in Tijuana Mexico. They are starting/doing a Stem Cell therapy for Sjorgens using your own stem cells,btw.
Personally when she started the Thiamine Therapy (mega-doses) she did a 180 in most of her symptoms,(minor dry eye and mouth symptoms still) but neuropathy,temporal headaches,fatigue,muscle weakness,dizziness,blurred vision etc etc all gone. There is a doctor here on yt that does Thiamine treatment "how to videos" (No Clinic needed)
Btw-Her Thiamine and B6 levels were in "normal ranges" per western medical protocol. But more and more info and research showing Thiamine deficiency is more prevalent than expected and correlations with MS, Bipolar,Anxiety, MG and gut health and/or IBS. And ALS also.
Oh almost forgot they also did mega-dosing of Magnesium. She's 85 now and is in better shape and condition now than when she was in her mid 50's and 60's. She was so bad for so long that "we" had an outdoor electric stair chair installed, a complete remodel on her kitchen and bathrooms to accommodate a wheelchair and electric shower chair etc. ..She was officially diagnosed in her 40s, was fully disabled and walker/wheelchair assisted from 50s until age 72, did Mexico Clinic therapy(s), 6-8mos later(maybe less) all symptoms gone! NO more walker or wheelchair. Shes 85 and going strong and we removed outside electric stair chair.... Only OTC vitamins and diet chande now.!
Good luck ALL 🙏
Almost forgot, Clinic also cut out all of her sugars and basically had her on a Keto/Carnivore style diet way back then. She still pretty much has gone completely Carnivore on her own instead of Keto, she says she feels so much better on carnivore and only 1-2 meals a day. She has no problem keeping to such a "diet" bc her health is 100% better. She was basically almost completely bed-fast with daily home health care...she started a slow decline to a cane, then walker, stopped driving,then stair chair, then wheelchair then bed-fast and daily home health, all the while seeing every specialist across the US,doing every test possible and taking multiple medications,infusions,injections, physical therapy, for 30plus yrs and only declined over those years, a doctor she was seeing in Colorado referred her to the Clinic in Mexico bc she was on her" last days" my FIL would have flown her to the moon if he thought it would help her. They met at 16 and 17 married a yr later. He was an Electrical Engineer with a masters in environmental science and she had a BA in Industrial Design and an Arctitectual Science. He has since past but they did have 8 wonderful yrs together after her treatment @ age 72.They got to travel the world and checked off quite a "bucket list" something they had given up on. I hope anyone dealing with a AI disorders can have the same outcome. Please everyone do a little research on above therapys and adjust your diets and see what happens. If anything like my MIL it could'nt have gotten any worse.....But NOW it's like she was "reborn" at 72 with just a diet change and vitamins and oh yeah a "parasite cleans" all these little things I've forgotten the Clinic did. Also there are US and Canadian Clinics that do this type of treatments not just Mexico,Turkey or Saudi Arabia but also yt videos about these therapys.We didn't have any videos 15 plus yrs ago to refer to.😢.....Again good luck ALL, I wish you the best.
I’m a masters prepared nurse and I self diagnosed myself with Sjogrens. I had the punctual plugs inserted into my eye ducts. 6 months later I was medically diagnosed with Sjogrens. I’ve had GI surgery and recently diagnosed with ILD ( interstitial lung disease). I’m feeling a cognitive decline.
It sounds like you've been through a lot. Make sure to take care of yourself and seek the support you need.
Thank you for your videos. I was diagnosed with Sjogren's about 3 years ago, my ANA Screen was positive. What bothers me the most is the neuropathy in my legs. Started with a new Rheumatologist and I'm hoping she can help with the leg pain.
Thank you for watching!
Take Alpha Lipoic Acid 300 mg twice in a day . Helped me a lot.
Thank you 🙏 Sjogrens has blighted my life 😅we desperately need more interested clinicians as public think it’s just dry eyes !
Thank you for taking the time to watch my video and leave a comment. I really appreciate it! It means a lot to me that you found the content helpful and enjoyed it.
If you have any questions or suggestions for future videos, please don't hesitate to let me know. I'm always looking for ways to improve my content and provide value to my viewers.
Thanks again for your support!
Thank you sooo much...l am an orthopaedic surgeon and this is the FIRST time l have been reading a complete chapter on sogren disease...very interesting..and helpful...l am sending it to my daughter Who is very INTERESTED IN NEUROLOGY AND INTERNAL MÉDECINE. GOD BLESS YOU..
thank you so much for the appreciation!
I was diagnosed with this almost 4 years ago and thank you for sharing this with us
I was hospitalized at 2
Weeks old for bacterial meningitis. I wasn’t expected to survive. I’m certain I’ve had Sjogren’s my entire life stemming from that.
I can remember symptoms as a child. It's awful
@@maggiestubbs9731 as much as it sucks, I actually feel worse for people who were previously healthy and then develop autoimmune diseases. We have only known this life- it makes it easier to accept. Plus, we have had a lifetime of figuring out how to navigate life while dealing with chronic illness.
I was diagnosed 2 months ago with sjogren syndrome but I sofer almost 4 years, last year was the worst. I have poly neuropathy, the neurologist told me and after a lot of tests rheumatologist diagnosed me with sjogren, my SSA was high. Thank you for the video .🙏
Thank you for watching!!!!
Absolutely informative & fascinating video…learned many significant issues that I wasn’t aware of i.e., 24:06 thought it only effected my eyes & mouth. I strongly believe I have it. Thanks for enlightening me❗️
Oh my gosh, you have just answered a hundred questions for me. I am struggling so hard and desperately need a doctor to help me. I have seronegative RA, and I know that I am very sick with seronegative Sjogren's. I have no saliva, no tears, horrible IBS, I'm in an electric wheelchair because my legs don't work, chronic migraines, chronic back issues/pain, ME/CFS, fibromyalgia, fatigue, exhaustion, dry eye, mouth sores, burning lower lip, Raynaud's, thrush, more. I have no transportation to the right doctors. I was very anemic last Spring and my iron is going down again. I wonder how many people are like this? Thank you for this video!
Thank you!
I am hopeful that you find help!
@@rheumatologistoncall Thank you! My mother had RA, my grandmother had Lupus, and my daughter has an autoimmune disease they can't identify. I guess it's no surprise one more is emerging.
Hi, do you have heart palpitations and heart thumping (heart beating hard) with low iron/anemia? I start to have frequent heart palpitations, severe lightheaded, cold hands, cold feet since i had heavy menses in november last year. I just diagnosed with sjogrens syndrome in november via blood test (positive SSA-RO and positive RO-52).
@@izreenfarah8689 I have heart palps but also take meds for a prolapsed mitral valve. I was anemic last year and had iron infusions. I'm past menses but had very heavy in my time and had to have a hysterectomy. I am seronegative RA and Sjogren's and Raynaud's.
Way to many!😢
I was diagnosed with Fibromyalgia 15 years ago then MS 13years ago, I have severe dryness in my eyes, nose, mouth and in my vagina, my skin is changing, I have old ladies skin, it's dry and thin, I have MRI's and my MS is stable, been on Ocrevus for 6 years, I get painful, swollen joints, and thinning of my hair, I do have nodules all over my thyroid, they were tested and are benign.
I am 35 years old and have had Sjogren's syndrome for the past 12 years. I lost my medical assistance four years ago, and sometimes I wonder how my future will be. Since my last appointment, I have experienced new symptoms such as fatigue, muscular, and joint pain. I have no idea what to do. In Brazil, this disease is completely neglected, but we keep going. Currently, I am in the US for work and will stay here for another month. I have been taking advantage of the many products available here that cannot be found in Brazil. I feel that Sjogren's syndrome is taken more seriously here. I wish I could apply for the studies they are conducting, but since I won't be staying, I cannot participate.
follow my channel, I posted a video about treatment and studies with ianalumab
I live in NYC. AND also don’t get any help. Was prescribed with a strong painkillers, antidepressant’s, and few more not important meds… So the things with autoimmune diseases are very bad everywhere. Unless, you belong to the upper echelon of society and very wealthy…
I saw 11 Dr's. Before I finally got a correct diagnosis. Don't give up!
I were diagnosed 2015 and my arthritis osteoarthritis doctors were great. Dry mouth, eyes and skin is very hard to treat. Using high end eye drops and taking medication for it. Having sojourn syndrome takes a lot of work and includes dry mouth.
Thank you for watching my videos and supporting my channel!
Check out LDN research Trust on RUclips . LDN is effective in sjogrens . (Low dose naltrexone) and many more chronic, debilitating diseases. It’s a game changer .
I consistently experience a Sjogen's flare - temperature, dryness, joint muscle and spine pain - 10 - 14 days after a gastritis 'attack' (maybe with liver involvement, difficult to tell). Just mentioning in case it resonates with others.
Thank you doctor for your helpful videos. x
Thank you for watching my videos!
My blood test for it came back negative but I have dry eyes (last year my eyes teared so much I could barely see to drive and was constantly wiping them) had a constant low back ache, fevers, fatigue difficulty, swallowing knee problems walking up and down stairs. Yet my Primary Physician doesn’t agree I have it. Thankfully my husband’s a Dr. MD, PhD and we (I, former Library worker) researched every weekend and symptoms kept coming back to Sjogren’s. Now I have itchy spots in my palms and bumps on my wrists. An elbow and eyelids. My condescending dermatologist wanted to punch out a section in one hand. I said no. Stitches are highly needed after and my palm already hurts especially when the brown patches spread. My Primary has finally agreed to refer me to a Rheumatologist. I’ve been waiting 2 weeks now and finally found several in my area and called him names cause they only take referrals. Been fighting depression constant brain fog.
I'm sorry to hear about the challenges you've been facing with your health. It's important to advocate for yourself and seek the right medical care.
I have just been diagnosed with Sjogrens and have very many of the symptoms.
I just diagnosed with Sjögren's syndrome too. What are your symptoms? Do you have heart thumping (heart beating hard) and heart palpitations?
No so much palpitation but more like slight tremors. I was put on Methatrexate because I was also positive for rheumatoid. And also
Pregabalin for the nerve pain and numbness. After 4 or 5 weeks on those medications the heart tremors are a lot less frequent, nearly gone all together.
I also had painful legs , and numbness in one thigh and both feet, sometimes swellings in my arms, tingling and staring pins in my legs and feet especially at night. Severe tiredness like someone turned of all my enger switch. All the symptoms have eased, some more than others, since taking the meds
Thank you you very much Dr. Girnita you seem to be a very dedicated woman “ l am finally now at almost 75 years old being tested for Sjogrens l have been suffering from this disease for over 20 years , l wish l could of had someone like you to tell my story too ,finally my PC Dr sent me to a Spine Doctor l explain my symptoms he then ordered blood test for the Sjogrens also l have severe carpal tunnel in both hands nerve study and EMG been done , you are so nice too thank you again and God Bless You 🙏🙏💕
Thank you for watching!
When I was in my early 40's I started getting symptoms that mimicked MS and then it went to subtle Parkinson's symptoms
Then I got hit with severe pain and swelling in my feet and knees.
My Rheum ordered a lip biopsy per my request to see if I had Sjogren's
as nothing was showing up in my blood work. I had a very high count of ?? in the microscope
So I was diagnosed with primary Sjogren's. This disease is far from dryness in your mouth,eyes,nose.
I am now diagnosed with Parkinson's and Lewy Body dementia at age 58
I'm so sorry to hear this! I hope you can get treatment to help you manage these diseases so you can still live as full and active a life as possible.
Prior to seeing this video and especially comments, to see how many people out there suffering like myself didn’t make me happy, of course, ( I don’t wish to anyone such an experience; but before I felt kinda lonely ( nobody else could understand what I’m going through). Thank you all
It's tough to feel alone in your struggles, but I'm glad this community can help remind you that you're not alone. We're all in this together!
Restasis immediately eased my dry eyes, and it went into remission after a few years. I was just about to file for disability because I could barely drive 5 minutes without eye drops. Sleeping was torture.
Thank you for watching my videos!
Hi Dr. I was diag. with Sjogrens 30 yrs.ago. I was told that I would need a good eye dr and dentist. So far, I have severe dry mouth, which I suck on lozengers/chew gum for dry mouth. I have dry eyes. I use otc tear drops. I drink my daily tea of ginger/tumeric roots/cinnamon stick, adding 3 Tbl sp of Apple Cider Vinegar. 2x a day. I also take Qunol Tumeric 1500, and vitamin D. Still very active at 66. My blood labs were good. I hope to continue my regimen as long as I can. Thank You for your videos.
Keep continuing the fight! You are doing great choices
Wow you're doing OK so far, I have extremely dry mouth, still waiting for blood test results, do u take any medication for dry mouth, to stimulate the salivary glance? Thanks❤
I have problems with understanding accents and have some hearing loss. You speak very clearly and I appreciate that. The closed captioning for your video was very accurate. Some come through on other videos as just nonsense. However, you should check the cc because it often didn't spell Sjogren's correctly, often substituting "children". For your viewers that have hearing loss, it's aways appreciated to have accurate closed captioning.
Wonderful! Thank you for watching my videos!
This was SO very good. Thank you. Not all doctors are as smart as you.
Thank you for your kind words! I'm happy to hear that you found my videos are helpful!!!
Wow and thank you! Most thorough and informative of anything about Sjogrens I have ever seen! My daughter found this and sent me the link. I’m willing to take part in the trials and will ask my Neurologist for further info. ❤️🙏🏼❤️🩹
So this is what’s going on with me. My God nobody in my family understands.
I feel so alone and my brain is so confused.
Thank you for watching my videos!share it with others to help them!
I have had this disorder for 17 yrs but it never has shown up in my blood work. I have all the symptoms 🤷♀️
Some of the numbers of my blood test over 2 000 times higher than normal…Also: I used to have tachycardia and slightly elevated temperature; lately just the opposite started happening: now often I get bradycardia and my temperature is slightly lower than normal…? Anyone knows anything about that?..Thxs.
Excellent Information. As a Male it has been a difficult journey as well. Being a veteran under VA care I was Negative lip biopsy but have everything BUT Antibodies and VA won't diagnose Ss without blood confirmation. They do a good job treating all my symptoms.
Thank you for such a profound and insightful reading! I’m getting through all this with Gods blessings and wisdom . ❤️🙏
Thank you 🙏🏻
I was diagnosed with Jsogrens and never heard of it , but all the symptoms match my body , I work part time , but the doctor is going to make me work accommodations , the headaches , the back and neck pain are to die for , the meds makes me sleepy and my eyes and mouth are always dry. I’m glad I can get educated on this , I’m glad my doctor was able to send me to an RA and that’s how I was test for ANA and came back positive . I’m just scared of the dementia part.
Thank you for watching my videos!
My heart goes out to you.
I am suffering from dry mouth , tooth problem, dry eyes for last 3 years but. Got no solution, i thought its manopause symptoms, thanks for sharing,
Now my one eye is diagnosed with wet macular degeneration, my tounge cuts also with dryness
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I wish I could find a great dr to diagnose this
Diagnosed 2002. Dry eye, have punctal plugs, dry mouth ,skin, dental problems, GERD, osteoporosis, Raynauds etc. and now pulmonary hypertension
keep fighting!
I have Ehler Danlos Syndrome and I’m pretty sure I also have sjogren’s. I have almost all the symptoms you mentioned. I need to find a doctor that will test me for it.
come to us to be evaluated contact our clinic email contact@rheumatologistoncall.com
I got diagnosed last month and its been a ride. I'm 24
stay strong!Happy Holidays!
@@rheumatologistoncall thank you so much ❤️❤️✨️✨️
Here is my list of diagnoses:
EDS, SLE, Scleroderma, Sjogrens, RA, OA, Hashimotos Thyroiditis, temporal arteritis, cranial nerve damage with CNS involvement, GERD, systemic yeast, etc. I've had COVID three times. The effects of these combined health challenges is almost overwhelming. I would rather have one year of feeling great, than how sick I've been and feel for my entire 67 years of life. I look 100 percent healthy, and try to behave that way. This too is an enormous challenge. However, I'm thankful to not look as sick as I am.
Have you been tested for MTHFR?
Maybe look into carnivore diet. Masses of people have had huge success with a lot of the health issues you have. I myself am 70% meat and believe I was pre diabetic or diabetic before starting. I had massive inflammation and chronic pain. Also my thyroid was large, hard, painful.
All gone in 5 weeks.
I was diagnosed at the age of 32, and that was 3 years ago.
Check my channel for other videos
One of the best doctor 👍 love all your videos thank you so much ❤
Wow, thank you!
What bugs me about all of these autoimmune diseases they’ve come up with…it seems they’re only interested in naming the disease, compiling symptoms, and treating symptoms only…pain relief is a major factor in this phenomenon driving patients to believe that is treating the disease…when are scientists going to actually start looking for the cause of this type of disease beyond calling it autoimmune….I would think theyd steer away from naming it all autoimmune because it’s becoming quite clear what causes autoimmune type responses…an enormous amount of poison being introduced into the body all at once…extremely toxic chemicals cause these types of responses…im going to leave this an open ended comment for a reason……lol……..
W8what I totally agree!!
My sister only had sjogren's when she was wrongly given tamiflu and couldn't be seen by a doctor.
Like agent orange
I believe that these syndromes/diseases are caused by tick borne infections that bombard us multiple infections from one biting species, ticks being one of them. If one has a weaker immune system than the infections slowly eat us from within, various tissues including joints, tendons, bone, organs, causing all these conditions there has to be a cause, yet they don't care to find it bc we make the medical system billions if they only treat symptoms. It's an evil thing to force patients into trying to find the cause of their multiple disorders.
I truly believe all autoimmune diseases are from the chemicals we put in our bodies from prescriptions given by our doctors. it saddens me. Doctors are quick to write a prescription because a medical guide from Big Pharma on their laptop says it is the only way to treat the patient. Doctors know nothing about the medicines. They only know what pharmaceutical reps tell them. And we want relief so we go along with it. Right now I have a huge break out of Purpura on my arms. It has been a year. My doctor can’t help me. A hematologist could not help. They referred me to a nephrologist who couldn’t help and told me to see a dermatologist. My cardiologist wonders if its my heart medicine. I’m scared not to take it as it is for Afib. I love this video and hope there are more like it. I sometimes feel like I’m dying because i get depressed.
Thank u for your heads up
Really appreciated by me hole heartedly xx ❤😊
I'm glad you found the heads up helpful!
@@rheumatologistoncall
Me too 😄🙏🏾🧡
Wow! Been diagnosed SS for 10 years. It has progressed significantly. Even with medication. SS bring on other health issues.
Thank you for watching my videos and supporting my education mission!
I was diagnosed with primary sjogrens in 2023. I had the brain issues since I was 8 yrs old. The doctors just kept saying it was a hormonal issue with the migraines. No one ever pointed out my depression which I suffered from since that age as well.
thank you for sharing your story
I was diagnosed with Sjogren's after having a stroke and multiple TIAs where no obvious cause was found. While trying to find the cause, my neurologist saw evidence in lab tests, scans, and symptom history that pointed towards cerebral/CNS vasculitis. He referred me to a rheumatologist for evaluation, expecting that I would most likely be diagnosed with Lupus. But I was diagnosed with Sjogren's and Rheumatoid Arthritis instead.
Glad it was helpful! Thank you for watching my videos!
Thank goodness you don't have lupus, because it is degenerative and fatal.
I was just diagnosed with Sjogren's and Raynaud's I'm 26
thank you for watching my videos
Thank you for the information what how we going to improve which vitamin is the best take
My 11 year old have an autoimmune disease that caused him unable to walk since January called HSP . but after using herbs medicine he can walk now God bless you Dr imenherbal on RUclips 💯
Thank you for this detailed information.
I am a patient with ssa and ssb positive. Peripheral sensory and motor neuropathy are diagnosed.
Used 4 cycles of Retuximab and two cycles of ivig.
Symptoms are gradually worsening.
Share with others the video to spread the knowledge!Thank you for watching my videos!
check into high doses of vitamin d also have a doctor check your level first because it can be toxic so keep an eye on the level also watch what foods make you worse even toothepaste sorbitol high fruitcose ect
I have Sjogrens, Lupus and MCTD. I have had my lumbar spine fused and recently my cervical spine fused. I get rituxan infusions and also use Cellcept and plaquenil. My daughter was recently diagnosed with Sjogrens. Thank you for your videos.
Thanks for sharing your story!Thank you for watching!
The hard part is the symptoms can be brushed off as something else like fibromyalgia or even allergies (dry eyes).
It can definitely be tough when symptoms overlap with other conditions.
Thank you, Doctor !
You are welcome!
I was diagnosed with Sjogren’s syndrome, apparently secondary to SLE in 2013. I was 44 years old at the time. I had an episode back in 2008 where I had a sudden onset of double vision and then about two weeks later developed paralysis in the right side of my face. I believe they called it cranial nerve five and seven palsy because they said bells palsy does not accompany double vision. I do have positive ANA, dsDNA, SSA and SSB antibodies. This year I was hospitalized for severe fatigue and muscle weakness and ptosis in my right eye along with another episode of double vision. The Neurologist in the hospital gave me Mestinon and the double vision went away and the weakness felt less severe, and it was then he diagnosed me with myasthenia gravis. I never knew until I just watched your video that people with Sjogren’s can develop myasthenia gravis. Can you please tell me how it’s correlated and why this happens?
Many autoimmune diseases tend to come together.. Sorry that you are going through this....Thank you for your continued support and for watching my videos. Your presence means the world to me, and I appreciate your engagement and loyalty. Stay tuned for more exciting content!
@@rheumatologistoncall Thank you! 😊
Can these patients have aggravated disease activity after a traumatic event either emotional distress or abusive relationships
@@Molly-e1xyes!! Number 1: Get the toxic people out of your life. Try your best to manage stress and prioritize self care. Eat healthy, the AIP diet helps people but it very restrictive.
I have 3 that I'm aware of. Sarcoidosis,which cardiologist thinks is in my heart, sjogrens, with a submandibular tumor of the salivary gland and polyarthritis that causes crippling pain I'm my back.
There are no answers. I'm thoughtnof as an interernist's learning project.
When I had blood test done, originally, my gp took long to let me know the outcome. He said I had an autoimmune disease, he thought it was Sjogrens. Totally disinterested.As if it was nothing. I looked in google.Then I want to an internist. I had all symptoms of lupus. Pain mainly for being photosensitive. Nobody cares. I started taking omega3, calsium mag, because of tankin anti inflammatory caps often.now 30 y later..my heart, nervous system,
Arthritis an depression, fatigue are bearable.Lost my first, second husbands, my 2 best friends, and my daughter, all I loved dearly.My pets are my happiness, and my faith are worth more than gold.
Your strength and resilience are truly inspiring. Keep holding onto your happiness and faith.
God be with you🙏🥰
Thank you, Dr. Girnita, for creating such an informative and concise video! My mother was recently diagnosed with Sjogren's Syndrome, and in searching for info about it, I came across your channel. That said, I was diagnosed with Multiple Sclerosis in 2012 (but had it since at least July 1997, the time of a severe optic neuritis attack) My MS case is ... not textbook at all (for example, no detection of MS-specific O-bands in the spinal fluid), and I never realized until seeing your video that Sjogren's Syndrome could have such extensive CNS involvement. A few questions: Can Sjogren's Syndrome cause:
(1) the "Dawson finger" morphology of brain lesions as seen on MRIs? "Dawson finger" is allegedly MS-specific, but I'm wondering if this morphology extends to brain lesions see in Sjogren's Syndrome patients?;
(2) heat-sensitive symptoms? For example, exposure to a hot shower or hot weather causes old symptoms to temporarily emerge?
(3) a sensation of a tightening band around one's chest, particularly when exercising or in other situations when the core body temperature is elevated? (The MS community call this sensation the "MS-hug", but I'm wondering now, how specific to MS is this symptom? Do Sjogren's patients also experience it?)
(4) foot drop?
Thanks for any feedback you can provide. I'm just curious regarding how MS-specific these symptoms actually are!
Thank you for sharing!
@@rheumatologistoncallPlease, I would also like the answers to these questions
I'm struggling with this and Hydroxycloroquin I can't take because I get severe diarrhea. I'm 55 years old and this came on after a very stressful divorce and neck surgery. They also think my daughter has now and she is 35. I'm miserable. The flares are worse with stress, lack of sleep, and allergies. The pain in my back and legs are so bad that it keeps me up at night even though I'm on pain medication. I'm allergic to Nsaids. My jaw hurts because of lack of saliva and my eyes so dry and painful. Mood changes yes because my husband can tell you. Headaches the only thing that works is Nurtec for that. Depression because you just want to give up from feeling so miserable. You just want to rip your head off. I have sweating on and off my body heats up like an oven out of nowhere. My hands and feet freeze. Fatigue is awful. The pain getting unbearable.
I'm so sorry to hear about all the pain and discomfort you're going through. It sounds incredibly challenging. Hang in there, and I hope you find some relief soon.
This is so relatable
Thank you so much! This has been such a help. I was just diagnosed.
Thank you for watching!
I am absolutely in shock right now coming across this video!!! WOW!!
I relate to SO much of this as far as the
- dryness
-reynauds
- arthritis
- pain (like everywhere lol)
- horrible sensory issues
- unexplained Brain MRI abnormalities (My results: There are a few scattered foci of T2 prolongation throughout the subcortical white matter, Subtle foci of FLAIR signal abnormality in the subcortical and periventricular white matter may represent early presentation of a demyelinating process.) and being told I may have MS but not meeting the criteria of O-bands, worsening lesion, etc...
- AND the spinal cord T2 hypersensitivities (my results: Moderate to large left paracentral disc herniation/extrusion at C6-C7 is minimally effacing the cervical spinal cord. This is likely impinging on the region of the C7 nerve root. Subtle T2 signal abnormalities on inversion recovery images in the thoracic spinal cord are likely artifactual. A repeat follow-up examination in 1-2 months with and without contrast may be done.).
They just told me as far as the spine T2 abnormality that it was likely artifactual and not to worry about repeating it...
I switched up my diet big time over the past year and I seemed to get my symptoms under control for the most part, but then I came down with a stomach bug and it caused a big flare up (exactly like a year ago when this all started up again!). Just all so strange because I started having issues at 24 that lasted a year then went away for 10 years (started at 34 and now having symptoms again at 35).
It's all just so frustrating not being able to get any answers even with a positive ANA SSA speckled!!!
I will definitely be showing this to my rheumatologist.... THANK YOU for your incredible content!! Definitely subscribed and will be diving into your other videos as well! ❤
Thank you!
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My niece was recently diagnosed she has an extremely rare presentation she's been having constant strokes before and after diagnosis there's only one other person in the world that presented like this with multiple strokes usually if you have a stroke from it you only have one and to add my sister died three years ago her mom from multiple strokes that they thought they had under control but they didn't and she passed in her sleep so that's scary right now they're trying to figure out how to stop The strokes we've been trying to look up all the information we can but it's so rare they're just kind of throwing everything at it right now
Omg I am in Florida and seen 4 specialists so far with NO treatment plan!! I hope to somehow speak w you but I am on disability. I emailed.
My 11 year old have an autoimmune disease that caused him unable to walk since January called HSP . but after using herbs medicine he can walk now God bless you Dr imenherbal on RUclips 💯
What excellent educational information.Thank you so Much for this i can relate to this as I suffer from this ,it has a detrimental impact on my holistic self throughout my body. My Rheumatologist diagnosed this.
I sympathise with you all..
Hope you all find a method to manage this debilitating condition.
I mostly struggle daily on a basis I have to take each day as it comes and assess the situation on who my day will be.
It's a painful condition.
Once again thank you for clear understanding.
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In the UK if you refuse the lip biopsy for diagnosis, you are just assumed not to have the disease and are left to get on with it, alone. I saw a rheumatologist in 2014 and she suspected Sjogrens but because I refused the lip biopsy, I haven't been seen since and over the past 9 years my symptoms have gotten much worse. Just because you don't have a diagnosis, it doesn't mean you don't have the illness.
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Some of these symptoms are the same list as B-12 deficiency. Watch this video, this title exactly : DIAGNOSING AND TREATING VITAMIN B-12 DEFICIENCY.
thank you for sharing
Thankyou so much! Very valuable information
Glad it was helpful!Thank you for watching my videos! share them with other people to help them be educated!
You are a blessing! Thank You ✨
I had a bad attack recently and I have v strange sensations on one side of my head and fatigue. The problem is My GP under reacts to my symptoms. I'm put on waiting lists even when I feel like I should be admitted and assessed. How do you deal with this? When doctors under react to significant symptoms? Thank you 💕
My 11 year old have an autoimmune disease that caused him unable to walk since January called HSP . but after using herbs medicine he can walk now God bless you Dr imenherbal on RUclips 💯
The band's don't always show up from lumber punctures for MS patients. It's quite common to have positive MRI and negative with the bands
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I was diagnosed with this Sjogren's Disorder years ago and famous tennis champ Venus Williams has it too.I also have a positive lab test for genetic celiac disease, the most common form HLA 2 or 8 I can't remember which;HLA stands for Human Leukocyte Antigen.I'm not on any medication,I just take vitamin supplements and eat what makes me feel good,but I've been crappy sick for years ;I think I have other Autoimmune disorders as well,you can have several autoimmune disorders at once!
I'm sorry to hear about your health struggles. It's tough dealing with autoimmune disorders.
I have been having horrible back pain (sciatica) for months. PT is not helping. Also having daily headaches. I have to get back to taking my 400 mg of Hydrochloriquine. Very painful.
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thank you!
Can a person have Sjogrens with a negative blood test but they do have 9 of the 10 symptoms as shown in a video of yours
YES!!!!
Yes!
As a nurse I thank you for this very informative video. I’m currently being worked up for Sjogrens. When it comes to the neurological involvement, could focal dystonia fit into this? The dystonia affects my hands.
Glad it was helpful!
I'm not the doctor but a patient. Yes, dystonia is lumped in there.
Was diagnosed about 15 years ago with Sjogren's and just recently DX with Parkinsonism.
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I developed temporal lope epilepsy with simple and partial complex seizures as the presenting symptoms at diagnosis with incomplete lupus. I also had severe anxiety and psychosis. The psychiatric symptoms went away after a year and haven't returned. The sicca symptoms and SS diagnosis didn't happen until 3 years later. To this day i only have a positive ANA, SSA and frequently low C3. I never developed the indicators of more severe lupus like dsdna or smith antibodies or complete SLE diagnosis.
It sounds like you've been through a lot, but I'm glad to hear that the psychiatric symptoms have improved and the SS diagnosis came later. Stay strong and keep taking care of yourself!
GRACIAS por tan valiosa informacion.🙏
Gracias por comentar
I have many of these symptoms. I am Hashimotos Hypothyroid since I was 22. I am now a few months from 64. About 4 years ago, I started having symptoms of dry eyes and dry mouth and arthritis. Tested for Sjogrens or Rheumatoid Arthritis antibodies which came out negative. Two years ago, I had to have cervical spinal fusion due to stenosis. A recent MRI indicates more spine issues, including stenosis, from my L2 to S1 region. As of today my eye symptoms are much worse. Dry Mouth is more prominent. Joint pain all over and definite signs of arthritis in my hands and feet. There are days where I am so tired and my brain just doesn't seem to want to work well. Everything on those days seems muddy. Things are getting much worse. The rheumatologist I saw four years ago relied on the antibody readings and since they were negative, didnt think I had Sjogrens. However, what you are saying here appear to match well with my symptoms. It sounds like I might need a spinal tap analysis?
I'm sorry to hear about your health struggles. It's important to keep exploring different avenues for a proper diagnosis and treatment.
Thank you, this was very informative.
In 1978 I had my right submaxillary salivary gland removed due to three nodes, then in 1984 had a reaction and had erythema nodosum, in 1988 I had meningitis but didn't know what type, but now know it was aseptic meningitis.
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Thank you@@rheumatologistoncall