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 RU-vid ........ 💯
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.
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
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. “
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
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
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.
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.
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 RU-vid 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..
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.
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 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.
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
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 RU-vid 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. 🎉
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!
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.
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 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 !!!!
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 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.
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.
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.
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
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.
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 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!
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❗️
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.
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 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 RU-vid . LDN is effective in sjogrens . (Low dose naltrexone) and many more chronic, debilitating diseases. It’s a game changer .
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 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.
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.
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. ❤️🙏🏼❤️🩹
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.
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❤
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
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.
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.
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.
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 🙏🙏💕
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.
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, 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 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
Your support means the world to me! To help more people and get this information spread faster please: 👍 Like and Subscribe 🔔 Turn on Notifications 👥 Invite friends to join Together, let's keep our community growing strong! 🌱🚀
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..
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 RU-vid 💯
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.
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 RU-vid 💯
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 RU-vid 💯
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 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!
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 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! ❤
I am always positive w/Sjogrens lab markers. It's always been my eyes that have been moderately dry. My mouth became slightly dry when I went on Cymbalta. I take Mucinex especially @ night 🌙. It DOES help.
Thanks for sharing!I'm happy to know that the videos have been able to support your learning and understanding. If you have any specific questions or topics you'd like to see covered in future videos, please feel free to let me know and I'll do my best to help.
I recently survived Spinal Meningitis. I was diagnosed with Sjogrens almost 10 years ago. I was only 54 years old. I really give credit to all the supplements and vitamins that I take. I changed my diet to an Anti-inflammatory Diet. No gluten, dairy, refined sugar (watch out for high fructose corn syrup and soda), soy,fried food and processed food. I went out to eat with my gf, she says, "Girl, what can you eat? There are plenty things to eat, you just have to change your focus. Today I had a check up with the rheumatologist. I'm off the immunosuppressant drug Arava that I was taking. My CRP levels, inflammation is down to 1. The Arava lowered my immunity so much that I was not able to fight off a head cold. Head cold turned into SM. I also just finished 6 weeks of Physical Therapy after being released from the hospital and rehab. Eat healthy and take the supplements. Yes, It cost extra but aren't you worth it? This is my answer for my gf who says,"It's too expensive."
Hi, I hope you don’t mind me writing, I just turned 50 and had a positive ANA and SSB. I see a rheumatologist in a couple weeks but I’m suffering a lot with spinal cord discomfort, hands, legs, pelvis etc.I’m assuming it’s arthritis, even though my rheumatoid factor tested negative. They think I have Sjogren’s because the SSB was positive. I wanted to ask if you wouldn’t mind writing me how did you go about getting the diet /the intermittent fasting,supplements etc. I feel overwhelmed starting this path but will try anything to not have the symptoms. I have a special-needs son who needs me, and I have to be in better health than I am. Thank you.
@@Diana-qi2mh Hi Diana. I'm Remae responding to your comment. On top of my Sjogrens diagnosis, I also have Degenerate Joint Disease in my back. Arthritis, wear and tear. Your comment about your spinal cord discomfort reminded me. Get your MD to schedule you for an MRI to find out if you have joint problems in your vertebrae. No, I don't mind telling you about my diet. I actually found it on Pinterest! It's called the AIP or Anti-inflammatory Protocol Diet. I don't really fast, but I do go at least 12 hours between my last meal and breakfast. It's not hard. It wasn't for me anyway. I just got started. I hate that our Rheumatologist do not just send us to a nutritionist specializing in Autoimmune Diseases, like they do diabetics for diabetes! I had to do my own research. I started with the supplements Tumeric, ginger, boswellia and fish oil. I take Milk Thistle for my liver. Some people take more supplements than this, but this fits my budget. Giving up sugar was hard because I'm a cookie monster. Lol. I sub with Stevia. Gluten is next, but there are good gluten free breads now and gluten free flour if you like to bake. If you change your diet, you will begin to feel better. You can't short cut. Your body will know when you cheat. You can do this. I did. I used to weigh 250 lbs. Frying chicken in the church kitchen. I weigh 184 now. I don't fry church chicken anymore. ☺️ Research the Autoimmune Protocol Diet. It will get you started. Stay Beautiful, Remae
I’m so glad that I stumbled upon this video. I’ve been having some major back pain and all of the doctors I’ve seen can’t seem to find anything and make me feel as if they think I’m faking the pain. I have so many of these symptoms and wanted to know if Bell’s palsy was also something related as I’ve had it twice now?
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
Thank you Dr for all the good information, but I get depressed and sometime don’t want to watch the videos. I can’t speak for everyone else but we want and need hope or good news. In other words what treatments are available if any! Or, can we eat better to slow down the progress? Thank you
How do I find a doctor that knows anything about Sjogren’s? I have seen so many ‘specialists’ who say ‘oh, Sjogren’s, dry eyes, huh?’! I feel like I’m falling apart…
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 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 lots of symptoms and am being referred. My mouth feels dry but there is lots of saliva there from constant acid reflux. I get brain fog, dry eyes, photophobia, dry nose, sinusitis, trouble swallowing food, goitre, arthritis, Raynauds ,cold to the bone in spine but skin feels warm, depression, mood swings, constant coughing, constipation and itching...maybe it's not Sjogren's and just lots of niggly things all at once.
Just had an elbow surgery canceled by the anesthesiologist because I wanted keep chewing gum for dry mouth until ready to go to surgery. I tried to explain sjogrens to him but he just looked at me blankly. He then proceeded to talk to me like I was 5 yrs old (69 yrs and PhD) I went home and in 30 minutes found 5 medical papers saying "surgery should never be cancelled or delayed due to gum chewing". I had an appt with anesthesia depart and brought copies of papers. I stated that he wasnt up on medical info including statements from American Society of Anesthesiology. The 2nd guy assured me that he would circulate the info so their 70 anesthesiologists would be up on latest. He also said that it would go in my file and it would not happen again. We are trying to reschedule which is taking time. Meanwhile the bones in my elbow are degrading every minute due to traumatic arthritis (only 50% left). If it gets so bad that they cant do the surgery successfully, I will be sueing malpractice and negligence.
Thank you. I found this very helpful. What do you do if you have doctors that won't work with you and are stuck with only seeing certain doctors because of Medicaid? I need to see someone in KY specializing in Sjogren's specifically that would understand that it can affect the CNS and PNS - doctors here for the most part do not think it does anything except affect eyes and mouth - but I have full blown systemic disease.
It's surprising to me that doctors would think it only affects the eyes and mouth. It is documented that it affects all of the mucous membranes. They need to do more reading up on the disease.
@@charmc4152 Yes, all the mucus membranes are affected! I totally agree. ) : I have vaginal dryness, now, too from this and a total hysterectomy 20 years ago. ) : It is an awful disease. ) :
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?
Thank you so much for addressing neuro sjogrens. This was great info on CNS symptoms. Can you please do a video on peripheral neuropathy due to sjogrens? Many people in my sjogrens group have small fiber neuropathy and autonomic neuropathy. 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 RU-vid 💯........
Yes, peripheral and autonomic neuropathy info would be very helpful! @roseo322 is your group an online group? I'm struggling to find a support community
@@LoveLifeYT Yes, I'm a member of a few facebook groups for both. I like the "Small Nerve Fiber Neuropathy" group and "Dysautonomia International" for the autonomic group. We do discuss both in the small fiber neuropathy group. I also participate in the "Peripheral Neuropathy" group. Just do a search for them and answer a few questions to join.
I am trying to find a more in depth look at the various skin manifestations (specifically in my case vasculitis). Any suggestion is welcome. Thank you for your time in educating us about this syndrome!
I am curious about Sjogren’s. First of all, I have MS. I was diagnosed 27 years ago. I have Hashimoto’s as my thyroid has completely crashed, I have Raynaud’s phenomenon, but my kidney function has been getting worse and worse and they cannot figure out why. They have tested me for Lupus but no one has ever mentioned Sjogrens….is it possible to have MS and Sjogren’s?
