Sjogren's Syndrome Affects the Brain and Spine
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- Опубліковано 19 чер 2024
- Sjogren's Syndrome Affects the Brain and Spine - All you need to know
In this video, learn about how Sjogren's Syndrome can affect your brain and spine, from symptoms and signs to laboratory tests, MRI, other tests, and treatment. Learn the difference between Sjogren's Syndrome and Multiple sclerosis.
#sjogrens #braindisease #spinedisease
#Rheumatology
#Autoimmune
#autoimmunedisease
#diagnose
#Sjogren's
#symptoms
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👩🏻⚕️ About me:
Dr Diana Girnita is a double board-certified physician in rheumatology and internal medicine. She completed a PhD in immunology, a postdoctoral fellowship at Harvard University, an immunology fellowship at University of Pittsburgh and a rheumatology fellowship at University of Cincinnati. Dr. Girnita graduated from the Nutrition Science course from Stanford University and a Mindfulness course from The University of Massachusetts; She is the founder & CEO of Rheumatologist OnCall, a practice focused on broadening access to rheumatology and offering patients an integrative medicine approach.
Dr. Girnita teaches patients about autoimmune disease and arthritis and helps them customize their treatment plans. Dr. Girnita is passionate about rheumatoid arthritis. The treatment plan is personalized to the patient's needs and incorporates proper nutrition, exercise, and stress management. After all,
"You have a disease, but YOU are not the disease"
* The information in this video is not intended nor implied to be a substitute for professional medical advice, diagnosis, or treatment. All content, including text, graphics, images, and information, contained in this video, is for general information purposes only and does not replace a medical consultation. Any comments and/or recommendations made in the comment section by anyone other than Rheumatologist OnCall do not reflect our opinion or recommendation.*
Check out my new video about BEST FOODS FOR SJOGREN's ua-cam.com/video/EYaOJckVTSM/v-deo.html
Thank you.
This Syndrome is gonna kill me.
Too many other diseases to type.
Bless everyone. 😢
@@spiritfinder321 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 🥺
@@spiritfinder321 I'm with you on that as well.
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.
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 UA-cam ........ 💯
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
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
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?
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
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.
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!
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 UA-cam 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..
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.
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.
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.
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.
Man I wish we had Drs like her where I live! I'm going downhill fast!
Me too
Ditto 😢
I agree!!
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!
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
I have had this disorder for 17 yrs but it never has shown up in my blood work. I have all the symptoms 🤷♀️
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 UA-cam 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. 😮💨
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!
I was diagnosed with this almost 4 years ago and thank you for sharing this with us
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. ❤️🙏🏼❤️🩹
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.
You are a blessing! Thank You ✨
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.
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 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!
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 🙏🏻
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!
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 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!
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!!!
Thank you so much! This has been such a help. I was just diagnosed.
Thank you for watching!
Thank you, this was very informative.
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
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 🙏🏻
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.
One of the best doctor 👍 love all your videos thank you so much ❤
Wow, thank you!
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!
Thank you for such a profound and insightful reading! I’m getting through all this with Gods blessings and wisdom . ❤️🙏
Thank you 🙏🏻
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!
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!
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 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.
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.
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
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!
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 😄🙏🏾🧡
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❗️
AGAIN, THANK YOU
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!😢
Excellent talk! Thank you!
My pleasure!
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
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!
This is excellent. Thank you.
You're very welcome!Thank you for watching my channel!
Please share with others to share the knowledge!
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 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
Fantastic information. Thank you
I'm glad you found the information helpful! Let me know if there's anything specific you'd like to learn more about.
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 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 UA-cam . LDN is effective in sjogrens . (Low dose naltrexone) and many more chronic, debilitating diseases. It’s a game changer .
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!
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.
With so much thanks!!
Thank you so much for your kind words! I truly appreciate your support and am grateful for viewers like 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
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.
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 UA-cam 💯
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
I wish I could find a great dr to diagnose this
Thank you for this very in-depth video on Sjögren’s and the possible CNS involvement. Do you do any out-of-state consultations?
thank you for watching!
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.
Thank you for watching my channel!
Please share with others to share the knowledge!
Thank you for these videos. Are there any trials right now?
Very little
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?
Check my other new videos on Sjogren’s
Thank you ☺️👍🏾
You’re welcome 😊Thank you for watching my channel!
Please share with others to share the knowledge!
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
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!
Share with others!
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
You're welcome! Thank you so much for watching my channel!
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 go diagnosed in 2018 SSB antibodies.
I believe I have had problems since childhood.
Headaches and migraines, tension headaches. Brain fog.
I keep getting told I should be on a antidepressant.
I have autoimmune thyroid problems
Raynauds
I am more concerned about being called crazy because I have been labeled!
So many physicians are so illiterate about this disease.
I fought so hard for so many years pleading with doctors telling them something was wrong and all they pushed was antidepressants. Until I got so bad that I finally got a practitioner to run blood test. I had high inflammation, and even then it was dismissed as Fibromyalgia 🤨
It was not until I had a MRI for a frozen shoulder that it was discovered I had masses on my thyroid which was miss diagnosed as cancer and half my thyroid taken.. thank goodness I asked for a pathologist in surgery.. and even then I fought for help! I finally found a rheumatologist to listen, and from there I got a endocrinologist to do a full thyroid panel and I was scoffed at by endocrinologist who had to eat their words because Hoshimotos was positive!
I have SSB, and positive ANA.
Thank you for watching my channel!
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 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.
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 UA-cam 💯
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 was just diagnosed with Sjogren's and Raynaud's I'm 26
thank you for watching my videos
thank you
Thank you for watching my videos! subscribe to support my educational efforts and share with others
Was diagnosed about 15 years ago with Sjogren's and just recently DX with Parkinsonism.
Thank you for watching and supporting my channel!
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.
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 for watching my videos!
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!
Thank you 🙏🏻
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
You find info about treatments and also foods in my channel
Dr Diana, could you pls add to your videos, information on how is it possible to know from a brain mri, if a brain tumor (Leaf Meningioma) is not really a tumor but related to PSs and if there is a specific mri scan to know this. Thank you.
Thank you for watching my videos!
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.
@Dr. Diana Girnita - Rheumatologist OnCall
Yes, topic that interests me is what should you expect from rheumatologist.
I got diagnosed last month and its been a ride. I'm 24
stay strong!Happy Holidays!
@@rheumatologistoncall thank you so much ❤️❤️✨️✨️
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 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
@@user-ch1zs4hm2iyes!! 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.
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
I can’t tell you how grateful I am for this video and you’re willingness to share your knowledge. I’ve been diagnosed with Myasthenia Gravis and Sjogrens and peripheral neuropathy. It’s been a long difficult struggle. So many Drs along the way had no idea what was going on. Even now I find that the Drs haven’t linked my diseases together and have expressed different treatment plans. Sometimes the one treatment is counterintuitive for another. It’s frustrating.
I have two questions.
1. If a patient has the neurological involvement, such as me, what is the long term prognosis. Is there a way to know what comes next?
2. How can I find a Dr that would be knowledgeable in this form of the disease? Do you recommend NYC, Boston, or somewhere in particular?
Thank you for your help.
Thank you for watch it! share with others to expand the education!
Many years I’ve been telling my dr of these symptoms … thank you… now to find a dr that can help 🙏
I've got it ill share all labs I had done for the diagnosis too helps others
thanks for watching!
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.
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.
Thank you for watching my channel!
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.