A Rheumatologist Explains: Sjogren's Syndrome
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- เผยแพร่เมื่อ 20 มิ.ย. 2024
- It can take up to 3 years to finally come to a correct diagnosis of Sjogren's Syndrome. What is it? Why does it take so long? Learn everything you need to know about this common but misunderstood condition here!
🔗 Links:
Your Appointment Home Run Handbook - connectedrheumatology.com/app...
The guide you need to be able to tell your doc your story -and find get answers once and for all!
⏱Time Stamps:
0:00 Intro
1:06 Is this you?
2:28 Sjogren's & the glands
4:04 Common Sjogren's symptoms
7:07 Primary v Secondary Sjogren's
9:29 Why is making a diagnosis so confusing?
13:09 What you need to know about Sjogren's & Lymphoma
🎥 watch more:
5 Things You Need to Know about your positive ANA: • 5 Things You Need To K...
5 Things You Need to Know about your Positive RF: • 5 Things you need to k...
Why does everyone think I'm depressed: • Why does everyone thin...
What happens when you see a doctor for arthritis: • What happens when you ...
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About me:
👩🏻⚕️ Hello! I am Dr. Elizabeth Ortiz and I'd like to thank you for stopping by Connected Rheumatology. I am a board certified Internist and Rheumatologist with over 12 years experience practicing Rheumatology and am passionate about teaching & empowering patients to partner with their doctor.
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I have Sjogrens and now have Lymphoma. I have been diagnosed for about 30 years. My rheumatologist in Atlanta was so wonderful. I had both the A and B results and my doctor was so excited to get those results that I thought he would start dancing! Not that he was glad but that he could say YES, this is what you have. I have nodules all over my body and in my lungs. I have water with me all the time. A good test if you suspect your dry mouth could be Sjogrens is to eat a saltine cracker. My mouth is so dry that I cannot do that without water or a drink to wash my mouth out so I can swallow. My Lymphoma started in my Thymus gland and went down my esophagus, as well as covering my heart. That was nine years ago. My salivary glands were so swollen and the pain was terrible. My Rheumatologist referred me to an ENT where they put a instrument in a place inside the mouth where they could pop the swollen parotid glands. Think the sharp shock you may have when eating a sour pickle. It was that, times 50! The actual procedure gave me relief and I was put on an antibiotic. Sorry for the length of this but if it helps one person, that’s my goal. 😊
God bless you, you've been through so much!
Yes in the name of Jesus Amen
I’m so sorry to hear that you have had to endure so much discomfort. My entire family, including my 40 yr. old daughter who was diagnosed with RA a few years ago just moved to Georgia. Can I ask who your rheumatologist is? We are looking for a new one here for her. Thank you.
You are so brave!!! Thank you for sharing that as I did read lymphoma is usually part of the disease. I've been afraid of it until now, reading this from you! I've had this sjogrens so long but it wouldn't show up on my Ana scans. Finally found it this year. 🙌
@@lauraapuan5610 Dr. Gary Myerson is the Best! He’s located in Atlanta at the Dr”s Building at Northside.
I was diagnosed with Sjogren’s and have started to feel the symptoms more now that I’m 71. I have a swollen tear duct in my right eye, skin rash, arthritis, neuropathy in my feet and hands, acid reflux, cough, dry mouth, Raynaud’s Syndrome, and fatigue. I get skin abscesses on my inner thigh once in a while. Chronic depression kind of goes along with it. What’s amazing is I look perfectly healthy. Kathleen A.
I understand . lots of symptoms. but DOCS still not convinced . dentists, Opthamologist,
2 rhumatologists. and dermatologists. 😮
Oh, dear. 100% of these symptoms are the boxes I’d check. Time to be proactive. I’m 69 and I’m really tired of watching my life go by. And, I’m just really tired. All the time. First time listener. Liked. Subscribed. I’ll be back. Thank you!
I’ve been diagnosed with fibromyalgia and Sjogren’s disease. This video explains why my rheumatologist does a blood test every 4-6 months and other valuable information. Thank you.
This is a wonderful and sensitive doctor. Actually, the comments section has helped me feel not so alone. I have had RA for 28 years, along with various and sundry other problems. I do not have a positive sjogren’s diagnosis, but I just had to get scleral contact lenses for my pitted and scratched corneas and I have had dry and burning mouth for so many years. Every doctor I have seen says he has no idea about what is causing it. I am so weary of all this, plus a form of vertigo bouncing (undiagnosed for a year) that this particular post really helps. Thank you to all who commented.
I have Sjögren’s since 2007. My first diagnosis was fibromyalgia in 1997. I did not have problems with eyes and salivary glands until later. I presented to my Rheumatologist because I would get low grade fever and uncontrollable chills. It was many years before salivary glands and eye dryness came about. The fatigue is unbearable. The dry eye is almost too much to deal with, but have found l “Low level light therapy” that works quite well.
Hi. Do you feel dry from inside I also feel dizzy even after eating. I feel like all my body is dried my eyes and mouth, throat and my chest .
I've had such horrible dry eyes and dry mouth for years that my vision is gone and my teeth are in terrible shape I need dental surgeries. I've also had the tell tale butter fly rash, joint pain, debilitating fatigue, etc all my life since I was a teen. My eye doctor in NV suspected Sjogren's and I have not been able to find a doctor since moving back to the Midwest who will run the tests or take me seriously. I wish more doctors were as passionate as Dr. Elizabeth! Thank you doctor for the wonderful, informative video!
Thanks for this video, I can share this with family and friends who don't understand what I and many others go through daily. I have had sjogren syndrome and rheumatoid arthritis for 13 years now and still feel that people don't comprehend how painful both conditions are.
Many thanks.
Sonia.
Waiting for my blood tests to come back now. My eyes and mouth were very dry and I had aching joints that were painful as well. I adopted a gluten-free diet along with eating nothing that was a GMO or processed. I stopped eating eggs as well. While my eyes ad mouth do still get a bit dry, the relief in joint pain was a two day miracle. No pain for two months now. I'll be interested to see what the tests show now.
So sorry for you!
My daughter has SLE LUPUS and SJOGRENS too. Almost everything you named she goes through. Thanks for sharing. 💜
I want to thank you for your clear, concise and information packed videos. I’ve just been diagnosed with MCTD and doing a ton of research (reading and watching). Your videos have been super helpful… and comforting.
I have Sjogrens Syndrome and my Dentist is the first to recognize it. My Rheumatologist confirmed the Sjogrens and also Psoriatic Arthritis. I also have Reynauds and now Autoimmune Hepatitis. I hope I add no more autoimmune diseases. The problem began when my mother who was supposed to be in hospice had sever pain with her heart and being and ICU nurse who handled pain,knew it would be simple to treat. She continued in pain until midafternoon and died early the next morning. My illness began in about ten days.
im so sorry. my Dad was hit by a car, developed LBD and died, then I went through a terrible divorce that's when mine started. Stress I think is at the root of this.
Best video I've seen in awhile! Thank you for all of this valuable information!
I'm just diagnosed with Sjogrens disease and have so much Paine in joints and muscles, subscribed and thank you so much for your teaching on this
This was very helpful, thank you !
Thank you for breaking this down!
Thank you so much! My sister and 3 cousins have Sjogrens and I have MS and TS. I wanted to understand as much as possible. As a nurse, I did know the basics. Your explanation of lymphoma was an eye opener! Thank you again!
Thank you for really good, clear, helpful information.
Thank you so much for this! So informative and much needed 💛
Angelina, i am so sori to hear your situation. Can only hope things get better soon.
I have had fibromyalgia for years . I have Cancer stage four in remission. I have all of thr diagnosis you have just explained to me thank you .I will wii make an appointment with my doctor on Monday
Excellent presentation - thank you!
Thank you for addressing the risks of developing lymphomas. I think it is under-addressed with this disease. Also, thank you for the video and equipping us with greater knowledge and understanding!
I have used CBD oil in my armpits when the swelling occurs.
Yes!! I was diagnosed with lymphoma about 3 years after I was diagnosed with Sjorgrens!!
Thank you. This is so great. It's been years before my diagnosis.
10 years to diagnose mine. I was even told to see a shrink SMH
Thanks for adding the list of questions to ask my doctor--it was very helpful!
My Rheumatologist asks me to come in every month when things are bad, and every 3 months when things are OK. The constant blood work is quite exhausting :'(
Now I've lost 98% of my Hair. From Fluconazole!
@@leeseck1696 oh God no
I know. I wondered why so iften why so much blood work?
I was diagnosed by my GP with Sjogren’s today after 20 months of my doctor diagnosing other causes- it didn’t help that in this time I also had Glandular Fever (mono) and Covid. But now that I know what it is my symptoms make sense. I have an appointment to see a specialist in a couple of weeks. It’s a relief to finally have an answer as I was sure it was CFS.
Is sjogrens syndrome life threatening?
My mouth & throat is always very dry for 2 weeks now. I guess I an suffering from sjogrens syndrome
This is an incredibly smart woman. Love this channel ❤
I listen to you all the time! Thank you I wish I could make an appointment with you.
So helpful for me here in U.K. I was diagnosed with ME 31 years ago and was sent down the path of psychological support! Thankfully that particular theory is being rejected by medical profession more and more, some still adhere to that theory.
Having been given the diagnosis of ME it’s like being parked and left and over the years my symptoms have shifted and developed and I clearly fit into a broader profile of Sjogrens and possibly other auto immune conditions. So your video is an illumination and pointer for me to see a rheumatologist. Part of me thinks I need to get on a plane to the USA as I suspect the U.K. isn’t quite as visionary in its scope with Sjogrens and these other autoimmune conditions. And that’s saying something after 31 years of ill health. So thank you
Thank you for sharing your story
Dianosed with ME too and your metaphor of being parked up and left is exactly how i feel, i keep looking for answers constantly to get my life back, so thank you for sharing your storyxx
I had the same experience. My symptoms first started at 9 after having glandular fever. At 14 I had chicken pox and my symptoms worsened with the additiion of reacuring sore throat and swollen glads. At 19 I developed psoriasis and nerve pain. I was sent for nerve condition studys that showed iI had thoracic outlet syndrome and a restricted nerve in my elbow. Sent to a neurologist had an MRI and he said I had ME nothing could be done and I just had to live with it. He went on to say that none of my symptoms were related and he didn't know what thoracic outlet syndrome was but he was sure it's nothing serious. At 25 I was diagnosed with psoratic arthritis. It took 12 years to get treatment and that only happened because I developed autoimmune related vestibular damage.
30 years after my first symptoms I had it confirmed by the eye clinic I had sjogrens. But rumitolagists don't seem to know what sjogrens or psoratic arthritis is so no chance with other medical professionals. So i rely on my dermatologist for limited treatment. And at some point between 25 and 35 my collection of autoimmune disorders attacked my ovaries causing premature overian failure and menopause.
My parents and I have aways wished we could pay for a private investigation. It will be 40 years this year from when my symptoms first started and I am falling to bits, I have lost 5 and a half healthy teeth in the last 18 months.
Yes same for me 14 years now ☀️
Same here. 3 autoimmune diseases I'm told so far? 6 years ago 1.Graves disease/ hyperthyroidism. Not fun at all. On 1daily pill to control it. Metholmazole. 2. Small Fiber POLYNEUROPATHY diagnosis 4 years ago from my neuromuscular Dr. Lot's of painful testing. Painful neuropathy legs & feet! Sometimes hv to stay on heating pad 24/7 just to get out of pain on feet & legs. Anything cold/ air/ air-conditioning I will literally cry & bottom of feet will turn black / purple because of the nerve damage done. Neuropathy super bad. 3. 4 years ago sĵodrens symptoms everywhere now. Not eyes or mouth - 2x a knot painful came up in front of ears- salivary glands swelled. Very very painful & had to spit out food & couldn't eat nor drink anything awhile. Drooling too. Rheumatologist said sĵodrens. I am now being seen at cancer center / hemotologist says enlarged lymph nodes 1 big in Hilar region in chest. 1in inguinal area too. Sĵodrens and lymphoma now. Red Blood cells too low & HCT too again now. Told sĵodrens. 3 days ago diagnosed with a pericardial effusion around my heart now too. Abnormal fluid around heart, my heart dr said. Sĵodrens can cause this too. 🙃 only 61 sick for last 7-8 years. 3 autoimmune diseases have taken my life away from me & left me in pain- miserable- devastated- useless, too sick to work & disabled. Disability will not recognize it to help me $. Turned down several times now. I'm disfigured with sores on face & in scalp too. 😮 no medications except for Graves medicine Metholmazole. Nothing else offered. ? 5 specialist & no help at all. I wish to just literally die! Everyday I pray God takes me. Yes I'm a Christian. And left suffering. 😭
Hi Dr. Elizabeth, I'm a med school student researching this disease for my immunology class and your video really helped me! Really grateful for the informative concise explanations you gave, thank you!
Immunology class! Awesome. Thanks for reminding us that there are students learning about these things that will one day be able to help us make even more advances
I am was treated gfor RA for approx 35 yrs. Every shot. Infusion. Pills out there. Inflammation levels remained high or I had adverse reactions. Then I got Raynauds, osteo, sjogren, l,upus, ? MS? Interconnective tissue/ neuro /muscularl syndrome. I was finall y referred to Cleveland Clinic Autonomic. Neurologic, autoimmune, genetic people. I was diagnosed with idiopathic severe scoliosis- had anterior - posterior spinal surgery ( 1980)herrington rods, pedicle screws, plate, bone. Now It's all a miracle that I am alive in I am so told. Now there's no a question about me having unknown rheumatological disease but NOT RA , not definitive Lupus, but similar, Sjogren but no lip biopsy, eye test was borderline - opthamologist and internist have treated me for years for it. Anyway, now I have large nodes in lungs and I am 74 and they just want to "keep me comfortable". I guess I want to know exactly what I have and all my specialist say is I am very complicated w/ multiple disease/ syndromes. .
@@k.eliseandrews6315 my gosh your story sounds just like mine.
Your sound is terrible! Can hardly hear anything u r saying!
Appreciated.Your knowledge ,ease of delivery,and a very pleasant demeanour.
I like the way you explain, I am going to use some of your techniques at my clinic.
Another great video. I did your online course for getting ready for your rheumatologist appointment and it helped so much. I went Friday and was a nervous wreck. I didn’t really get answers, but he’s running more labs. I have positive ana, swelling (inside only), muscle aches, hips hurt, stiffness, debilitating fatigue and all within the last few years I’ve been dxd with IC, thinning corneas, dry eyes, a cavity/decay which is rare for me and a crown done, CKD, etc. I think they’re all related. Doc says he’s guessing Sjogren’s over SLE, so I’m praying my labs give us answers. I need my energetic strong 💪🏼 self back and if that’s not gonna happen, I need to at least KNOW what I’m dealing with. 💜🌸🐝🦋
Hey how did it turn out did you get into remission?
Very helpful information! Thank you.
@kenny vaddy SPAMMERS SUCK
Excellent video. Thank you.
Excellent information, thank you
I am a 73 year old male with sjogrens, I had malt lymphoma in right lower lobe, in 2009. I have neuropathy, and Klinefelter 47xxy. thank you for the presentation.
I am a Biology Major Student, have been dealing with so many issues for so many YEARS! My doctor has been looking for answers for YEARS. I finally after 6 years got a positive ana. My doctor mentioned Sjogren syndrome but also Hashimoto/graves/ ect. 🥺
My affected are mouth, pancreas, gallbladder, liver, brain, joints, stomach, skin, nervous system AND heart . My menstrual MOST times go past 40 days. 🥺🥺 I have digits that swell and get red/itchy. TSH fluctuates from normal to high. So many mental health diagnosis as well. Symptoms change by month
More love such a great information,motivated.
Thanks for explaining the risk of lymphomas. I wondered why my rheumatologist always checks my glands!
Thank you! I have all these, plus a lot of overlapping conditions like RA, Raynaud’s, fibro, etc. I had breast implants that, when removed, relieved at least 80% of my problems.
@Demian ALIKA you've already said that. stop spamming.
This can work the other way - from cancer to auto-immune deregulation. Thanks for your clarity, and factual insights.
Thank you for the clear explanation!
Could you please do a sub-segment on the neurological aspects of Primary Sjogrens? Small Fiber Neuropathy (and the extreme severe disabling pain that it can cause - not just tingly fingers-and Poly neuropathy and length dependent neuropathy?
Oh my gosh! The way you describe the phone call and the what?! is all me 🤣😂 and yes I have Sjogren's and rheumatoid arthritis.
Very helpful, thank you!
Thank you doctor. This was very well explained.
good your video help a lot thanks
Hello Dr. Ortiz! I appreciate your educational videos on such complex diseases. I’m really curious about your thoughts on patients who are dealing with auto immune issues with no spleen. It’s a scary situation with little information on the subject. Thanks again for sharing your knowledge.
Wow! Totally described my experience; right down to negative SSA/SSB but pos RF and some of the other AI markers.
Initially, I was diagnosed with IBD & still have issues 5 years post total colectomy. Following up 6 month intervals with new (was my second opinion - actually 3rd…) Rheumatologist, my dentist & will see ophthalmologist in December. Some mornings I have trouble opening at least one eye. It’s brutal dryness.
Cancer runs in my family so we are also discussing further options with IBD. I’m not interested in any more surgeries so we monitor all ends for now.
I’m thankful to find your channel!
Thank you for sharing all the information. 2 Jears ago i was 53 i'm was diagnosed with Hypermobilety Danlos syndroom and dysautomia. Its was a long way and still is. Thank you 👍
My sincere thank you
thank you! very informative. i have some of the symptoms you describe, particularly extremely dry eyes, dry mouth & dry nostrils. i was tested for Sjogren's Syndrome about 6 or more years ago & the results were negative. i spend a fortune on eye-drops, which work a little, as the ones prescribed were almost useless. i now have pain in my hips/legs after even short walks, which feel like muscle pain, rather than joint pain, which you mentioned. you've certainly given me pointers to take to my GP - if i can get an appointment! (i'm in the uk).
I have this syndrome. Some advice. Your GP will be of little help based on my experiences. My advice? Take black seed oil, a good multivitamin with comb adult. Read the book the gerson therapy, take cold pressed coconut oil and oil pull at night. Take pumpkin seed oil for your skin. Do yoga yin yoga and kundalini yoga.
Blood tests show nothing for me . I have every symptom . My doc is beginning treatment.
Being that I have Lupus SLE with features of Sjogrens, per my doctor, that was quite helpful info. Now I know I need more testing to see if I really have Sjogrens. Thank you.
Thank you very much for your video doctor, you are instructive and attractive.
We need good Rheumotologists. I am on my third one and at the point where I don’t even bring up issues because they don’t think my chronic pain , fatigue and nerve symptoms are related to my Sjogrens diagnosis. The latest doctor if my blood work is fine dismisses my concerns and states it is fibromyalgia. I haven’t had a pain free day in more than a decade. Thankfully the pain is low to moderate but daily pain wears you down. I think the bigger reason patients avoid the Rheumotologist is their concerns are dismissed.
Please don't dismiss Fibromyalgia, it is a real thing and there are medications that relieve the pain. Most autoimmune diseases are not medicated for a cure, rather they are to relieve the symptoms.
Maybe next time tell your doc, "I need you to be curious and think outside the box, because I need a diagnosis!" Get them to do the work. That's what you pay them to do. Sometimes doctors need to be pushed to do their jobs. Best of luck to you.
@@cbryce9243 not dismissing it but they blame arthritis, tendinitis, bursitis, etc. not dismissing those. They are all real but the doctor needs to determine the cause. Fibro is a disease diagnosed by exclusion of all other causes. For a doctor to say it is fibro without doing that is lazy. Telling me it is fibro is them trying not to discuss the real issues. I have Sjogrens and it causes all the things fibro causes so what do you think is the real cause for me. I have relatives with fibro and it the cause of their pain as they have no other diagnosis. My doctors don’t seem to realize what Sjogrens cause and throw a different reason at me every visit. They are dismissing me. Early. On before the Sjogrens was found they said fibro but realized that it was something more. So for a doctor to dismiss me with fibro is lazy at this point. I should have typed all this initially as I don’t want to dismiss anyone’s true cause of pain. It is also common for Sjogrens patients to develop arthritis and other diseases that cause pain and I deserve to know if I have developed any of those.
Also I don’t know about your experience but my experience if you try in any way to educate the doctors their treatment of you gets worse. I can practically see their eyes glaze over when I answer their questions about how I am doing. My blood work doesn’t support my symptoms to them. That is ridiculous but I can’t change a doctor who only goes by the number. I think after more than a decade I know my doctors better than you.
I feel you, it has taken years, many doctors appointments and finally a Rheumatology appointment with even more multitude of blood tests to agree that I have connective tissue disorder related to Sjogren's and Hashimoto's and like you for years now basically from my neck down I am in constant pain again like you low to moderate some days worse than others but there's not a day that goes by that everything doesn't hurt to some level and the fatigue is ungodly ungodly
Hi Dr. Elizabeth. Is it possible to have a positive blood test for sjogrens with out dry eye and dry mouth and still have sjogrens ? Also with a negative lip biopsy.
Sore throat, joint pain, the first thing they assume is that you have covid, Cant even see your doctor to assess you properly. I'm so miserable and depressed.
Yeah. I'm so sick of covid.
I agree! My primary care doctor assumed that too, and it's so frustrating. I'm so sorry you're going through this!.. sending love ❤️
Why can't you see your doctor
Make an appointment to rule out Sjogren's syndrome versus lupus and try not to tell them anything else. See if that gets you in. Make sure you write all your symptoms down.
Just in case they might say it's your diet, cut out all high fructose corn syrup in drink or food, msg, GMO foods ( if you have to use sugar, use pure cane sugar only), cut out as much sugar as you can, cut out bread, and processed foods.
You could try low dose Naltrexone and can get be seen by a doctor online, then have them compounded nearby and then once you have the dose you're on all the time, you can order tablets online.
LDN is an antagonist that helps your body to regain homeostasis.
It is used in high doses for drug and alcohol abuse but in low doses they have found it is good for autoimmune diseases including cancer.
@@slicedice577 because they're afraid she has covid and it's probably Sjogren's syndrome or lupus. Or some type of autoimmune disease.
great video Dr. so informative and with a positive energy. I am a nutritional therapist. hello every one!
Something put me in the hospital back in 2010, and I spent 3 weeks in three different hospitals in two states. The experts told me they didn’t know what it was, but it was probably autoimmune related and it could come back at any time.
I have battled whatever this is ever since, with no one taking me seriously (I only have state insurance, which is definitely a contributing factor).
My symptoms match Sjögrens perfectly, right down the line.
I’m starting to worry about my liver and my lungs, as I am having trouble breathing and UQ pain (as well as abnormal labs and elevated glucose- I am also diabetic) and very dark urine.
Thank you for this video.
I had similar experience. My flares descreased once Evoxac/Cevimeline was added to my pile of prescriptions. That's pronounced E-VOH-Zack. I never pronounced the cevimeline lol anyway, if you can get a doc to listen, maybe this could also help u. Also have zanaflex, neurontin, T3, nsaid, etc...i do feel the Evoxac helped my systemic issues, not just the eye and mouth.
I had a lip biopsy done and was diagnosed with mild chronic lymphocytic inflammation. My lip biopsy had a borderline score of 0.8. All of my ANAs, Rheumatoid factor, SSA and SSB antibodies came back negative. My ESR and CRP levels are always high which these tests are used to check for inflammation. I see a Rheumatologist in April and I’m excited to hopefully get some answers.
May ask who did your lip biopsy ??? Thank you. God Bless
@@kellyschroeder7437 I can’t remember her name but she was an eats nose and throat specialist. I just recently had 2 rashes and my doctor said they were autoimmune rashes so he wanted to recheck my ANA. After 14 years of having a negative ANA and 7 months ago it was negative, I finally got a positive ANA of 1:160 and the Rheumatologist’s nurse practitioner that I saw claims the rash could or could not be connected to my positive ANA. I told her yes it’s connected trust me. I don’t understand these doctors sometimes.
Thank you
Both my mom and maternal grandma have diagnosed Sjogren’s, but my doctor doesn’t think I do because I had negative RA factor and antibodies. I’ve been diagnosed with AS and PsA, so it’s likely I do have it, secondarily. Annoying, especially the gland swelling under my jaw and in my armpits. Nobody really takes that part seriously when I tell a doctor about it, even though sometimes I feel like it’s going to choke me. Still, it’s not my worst problem so far, so I guess I have to pick my battles, unfortunately.
But this video was super informative, makes me think even more that I may have it in my list of medical issues.
I use CBD oil inside and outside the mouth. Works for me.
@@titus310always3 Can't get it in UK.
So you have sero- negative form. You may have suppressed immune system plus autoimmune, which is ironic but occurs . I hate physicians who treat lab tests instead of people.
does the cbd oil help with the swollen glands under the jaw ?
your rite .. when i tell docs that , they don’t take you seriously! annoying
Can Lyme Disease cause you to get Sjogrens ? Because I have been through all kinds of tests to find out I don’t have rheumatoid or lupus . Was diagnosed with a positive Gad 65 been treated for stiffperson syndrome and now they say I have a low positive Sjögren’s syndrome.
I have severe large and small fiber neuropathy (literally head to toe) due to primary sjogrens with other organ involvement. I am negative SSA/SSB. I’ve read that people with neuro-sjogrens typically are seronegative. My rheumatologist did an early sjogrens panel which proved sjogrens. My doctor wanted to do this test before a lip biopsy, I’m glad he did. My first neurologist thought I had MS which is not an uncommon misdiagnosis with someone with neuropathy as bad as mine. John’s Hopkins has an amazing article about this.
Did you had a MRI?
You do your job best
I got diagnosed with Sjogerns a few years ago with a specialist from temple hospital in Phila i had no positive test results but he said Sjogerns very rarely shows a positive Ana especially if you present with neurological symptoms also had mri done to rule out ms. Thank God he didn’t rely on bloodwork and went by my symptoms and started me on plaquenil
I did the neurological symptoms subside with the plauenil ?
What are the neurological symptoms please I think I have sjogerns for years
Thank you Dr for your informative videos. I'm a career RN. I have EBV and I'm certain Sjogrens and stating Lupus. Since having Covid 2 years ago I developed abdominal pain, elevated BP and blunted hearing in one ear 6 weeks later. My ANA doubled. Endoscopy only showed inflammation. My tummy gurgles constantly. I'm in pain every other week. I had to leave my full time job because of it. One virus triggers another. Even a common cold can trigger a month long episode. I so appreciate your kindness and the way you give information and comfort. Hope is sonething everyone needs. Thank you so much!
Thank you!
Love your explanations, may you make a video explaining SLE VS SS in terms of different antibodies? I have ANA and positive SSA, others are negative. i was diagnosed with Lupus but I have more SS symptoms than Lupus, which one I really have? Very confused,
Me too
Is there a connection between sjogren's and hashimotos, and fibromyalgia? As I have hashimotos and fibromyalgia and suffering with dry gritty eyes especially in the morning and burning too along with sore body and awful fatigue. I've been having alot of fatigue before the eye issue began in me again..
I had all negative immune tests. My ophthalmologist had diagnosed very dry eyes and said the lip biopsy was the gold standard. I also have dry mouth, joint pain, redness, swelling. Yuck, I never thought a lip biopsy to bec invasive. The ophthalmologist said the positive tests only come after damage is done.
Sjogren's Syndrome is so much more than dry eyes and mouth. I didn't know I had it until a lip biopsy. I had the swollen joints, pain was extremely high and the fatigue was insane. I am one of those who test negative for blood work
I take Plaquenil and Rituxan infusion for my treatments
along with pain meds. My first signs were dental issues. Teeth cracking or just the tooth crumbling
Isn't it just? It sounds fairly reasonable. Dry mouth, dry eyes, fatigue. They are all totally out of hand for me, though. I can barely see, teeth are breaking off daily. Skin is awful, too. Oh, and bald, just as the icing on the cake.
I understand your situation. I was on Rituximab for 2 years as part of my 2.5 year DLBCL lymphoma cancer treatment. It helped the symptoms but can't be on it now. Shortage of specialists is making it challenging for many of us to get best treatment/care. Keep on fighting! We all need to stick together. I wonder if there's a support group on Facebook for all these ie sjogrens. Think I shall look. Best wishes for you! 😊
@@flowergirlabc123 Living with Sjogren's Syndrome channel here on TH-cam she has a FB page. I'm not sure if it's a support group but she has been encouraging to me. I agree, the specialists are either retiring or their being over loaded with patients. It's a struggle but we do need to talk about our symptoms and treatments to others here on TH-cam. I recently had to change my Plaquenil from 400mg to 200mg because of the itching side effects but did add the 4mg a day steroid. Rituxan is helping my symptoms for now. Best wishes and I hope you will check out Vickie's channel 🙂
That's literally happening to me right now... My doctor kept telling me I'm just under stress so I gave up going to the doctor's but upon a dentist visit, my dentist told me my teeth are decaying way too quickly so I went back to my doctors repeat it all my symptoms but added in what my dentist said but my blood work keeps coming back fine but now I'm having autonomic neuropathy so my doctors finally sending me to a rheumatologist I'm in so much pain I'm so exhausted I bleed all month long now my body swells like crazy plus a whole other myriad of symptoms.... Basically I had to advocate for myself to see a rheumatologist because my doctor forgot sjogren's syndrome was even a thing apparently
@@Thebigdogg123 I'm sorry your going through this but unfortunately it is part of the journey for alot of us. Be prepared for a 4-6 month wait in seeing the Rheum. Request to be on cancellation list in case someone cancels you could get in sooner. Once there ask for lip biopsy
and some Prednisone for your flare and pain. Lip test you will need ice packs and pain reliever for a good 3-5 days. It hurts like the Dickens but it's worth the diagnosis.
I hope you get it as I know what pain your enduring right now. Stay hydrated stay out of sun/ heat as much as possible
There are some who don't test positive even with lip biopsy( I just learned this) I hope you get a sympathetic rheum 😊🤗👍
Thank you for this very informative video. I have this and the dry mouth was awful for my teeth. The dry eye situation is a daily battle. I feel better just knowing I’m not extremely unusual in my symptoms. No Dr has taken the time to fully explain my condition. Maybe it’s not fully understood even by many internists.
Sunny, l went to the dentist and he found multiple cavities. I am always at the dentist. Do you find the same thing happening to you?
Do you?
well that explains all the dental procedures I have been having
Thank you for sharing info, I have a friend who has it.
What if you have negative ANA, RF and negative with the specific Sjogren antibodies? Is it worth getting a lip biopsy? I have a lot of chronic health issues but my mouth isn’t significantly dry. My eyes are very dry to the point I never even had tears 💧. I had a schimmer test and the strip was completely dry.
Sjogrens diagnosis 2000 at 42 and scleroderma in 2013. Hydroxychloroquine for 23 year helped prevent muscle pain. Recent retina checkup revealed retina damage, which is a potential side effect of the drug. I’m now 64 and have been taken off hydroxychloroquine. Hand pain has doubled and muscle pain is terrible. I see rheumatologist in 2 weeks to determine next step for pain. It’s essential anyone on hydroxychloroquine gets yearly retina exams. Retinal toxicity can cause blindness. My retina is thinning, and I have glaucoma in one eye. Hoping to find a good med for muscle pain. Note- I have NO INTERNAL ORGAN INVOLVEMENT so far. I also get yearly echocardiogram and lung CT to check for fibrosis.
There are good AND BAD RHEUMATOLOGISTS. Don’t settle for less than the best! Make sure they work with Sjogrens and/or Scleroderma. Stay strong and Advocate for yourself!!!
Scleroderma is terrible! I'm sorry you have it :(
My eye doc and rheumatologist make sure to check for retina damage since I've been on plaquenil for 16 yrs.
This was interesting thank u
When I started getting ill, I was afraid that I had lupus. My GPhad the ANA test done. It was negative.
But the spacalist said that in Lupus, the ANA test is negative in 85% of patients.
So I do have Lupus. Managing it fairly well.
Mine were negative, but my early sjogrens testing were high and positive. Also, have very large lymph nodes.
Hi your information has really assisted me, as 15mins with your specialist doesn't cut it. It seems I have Sjorgrens, Mixed Connective Tissue & SLE, however all as overlapping secondary. I have been thinking about the when for all of this...I have been doing damage to my eyes, ( cornea erosions, pieces of my cornea coming up and eye ulcers) for more than 12 years, and multiple optomitrists, and Drs, have asked me what I was doing to my eyes... and thinking, i have need water beside my bed for a bout 15 years... and there had been the joint pain, the Reynauds...when I first presented with Reynauds, 2 Drs didn't know what it was... the whole journey has been pretty frustrating...videos like these give great information. I thank you so much for being so concise.
Please suggest any better eye drops or solutions for severe dry eyes
What about with a negative ana test.
Had blood work and the lab even put in there suspect sle with my numbers being so wacked
I was a lab tech. In the specimen processing many years ago. SSA & SSB were esoteric tests.
Isn't that why we have specialized doctors?
Thank you🙏
Everyone with Sjogrens needs to know to watch out for Dysautonomia/POTs.
I am so glad I found you!! I think I have this! I have all the symptoms of this. Going to have it checked out.
What's your diagnosis?
This has some very similar symptoms to Systemic Mastocytosis which is what I have though some of my symptoms are extreme and life threatening. SM is not really considered autoimmune but it depends who's talking! lol Interestingly my sister just got diagnosed with Sjorgren's so we were comparing similarities and they were endless!! I've wondered if both my mother and sister didn't have some form of Mast Cell Disease since I was diagnosed by a bone marrow biopsy. We've all had weird undiagnosed issues since childhood! I also have EDS and POTS which is a quite common cluster but recently I'm suddenly hearing Sjogren's in mast cell groups so perhaps it's part of the cluster? Does it show up in a genetic workup?
Doctors often draw the wrong conclusions by choosing something well-known aka 'easy' and stop there which is frustrating and can be dangerous. And do you see this in multiple family members? Some autoimmune issues are hereditary and some aren't. In my case they say no even with a genetic mutation but I've seen so many cases of multi generational cases with autoimmune issues. Can it be influenced by changes in diet/gut issues? Which we know seems to be the root cause of so much of our issues!! I think all these issues are far more common but many are just misdiagnosed, especially if symptoms are complicated, in my case it was a lifetime (40 yrs) to finally find out what was nearly killing me. I'll pass this along to my sister, thanks for the information!!
Thank you so much for sharing your story
I have sjogrens and 5 other auto immune including fibrilomyalgia. Lots of pain to say the least. I was finally started on hydroxychloroquin twice daily. 3 months later, I feel NORMAL with some pain, very little actually. Praise God!
Same. HCQ and imuran both gave me my life back.
Thank God for this dr. Thank God for your comment!!! I have 5 autoimmune and the info here is amazing!
@@realisrare38 Do you feel well enough to workout and do have increased energy? I'm going to talk to my doctor about possible medication for my sjogrens. My symptoms are very minimal overall. I can live life fine with my current symptoms
Hi! I am 39 and have been diagnosed with pSS 10 years ago. Now I have both salivary glands destroyed, making it difficult to eat-both swell and hurt. Is there any help to that? Anything? Steroids help with the disease flaring but it does not help afterward, it is destroyed and malfuctioning. Can you advise where to search for help? Thanks a lot !!
After 35 years of being diagnosed with fibromyalgia, changed rheumatologist has negative labs so I had salivary gland biopsy and I had extensive inflammation. unfortunately hydrochloquine because making me feel like I was going to pass out after 2 months and I had to stop taking.
I want a video on UCTD from you! That is my diagnosis and possibly Myasthenia Gravis and EDs for now. I appreciate your explanation of UCTD and why it’s so hard to differentiate connective tissue disease sometimes! I feel I actually just have a few different things. My Dr keeps saying it is an overlap but overlap and UCTD is different. So I’m confused. But at least they are figuring it out and I’m starting treatment so it hopefully don’t get worse!
I am 70. Have been trying to get into a rheumatologist for 20years. Been suffering since 14 when diagnosed scoliosis. Down hill from there. Be patient and thankful you are being taken seriously. I am living in Arkansas, need anything else be said. Set watch back 50 years when in a the state. Pray your car doesn’t break down. You’ll never have enough money to get out!
@@j.haulum2444 I have been sick and trying for 17 years and just finally got this far
I wish everyone would not use initials. At least once spell it out so we know what you are talking about. Very frustrating.
@@glendagrant9042 I’m sorry I was assuming the dr who put the post would see and answer and know and never thought about other people. It is Undifferentiated Connective tissue disease. I have been fully diagnosed Dermatomyositis now.
@@heatherr1141 Thank you.. I have undiagnosed disease. Trying for years. Doctors do try but other than Hashimotos nothing found. But now my son has terrible disease for last 2 years. They have decided on non radiographic ankylosing spondiolitis. Has totally changed his life from being very active in all sports in Hawaii to being off work on short term disability. He is back at work now. Has been treated with a few top of line meds and steroids. He is a little better now or has come to terms with it better. I have joint and eye issues but most difficulty lung and breathing. My allergy asthma Dr tried so hard but finally I just said no more. It is what it is. I am having a period of less symptoms and less short of breath now. I can deal but seeing my son suffer is the worst. He is a clinical director for a medical center so very fortunate to have lots of support in the medical community. Still a very hard road.
My wife has Sjogren's. The most relief from her dry eyes has come from Scleral contact lens. They are custom made to fit your eye balls and they hold fluid to reduce the dryness. They are very expensive, about $1,000 per lens, but if you are in pain from dry eyes, they are well worth the money. They must be fitted by a specialist. It takes about 3 or 4 pairs to get the fit right- hence the high cost.
Can Sjogens affect the hair. Like alopecia and joint pain?
Thanks
jUST been told I have this and fibro Thank you for this information
I tested negative with my ANA blood test I'm booked in to see a rheumatologist what might be my next step, my symptoms are dry eyes, dry mouth, dry nose, dry skin on my head face ears, hair thinning, sores red that come and go all over my body and digestive problems to. Brilliant video very well presented and you explain the disease so well.
I imagine your doc will 1. make sure your ANA blood test was done using the preferred method, immunofluorescence 2. Do their own testing, making sure to include the SSA/SSB antibodies (even if your ANA is negative - occasionally we can catch positive SSA or SSBs) and 3. after doing full eval - likely discuss a lip biopsy. When the labs are negative but someone's symptoms REALLY point towards, Sjogren's, a lip biopsy can help make the diagnosis. Hope you get some answers!
@@ConnectedRheumatology Yes I'm hoping I get some sort of answer to what's going on.
Yes, I also have all those symptoms plus more. I'm almost at my 4th moth on Hydroxychloroquin. My SSA and ANA were negative but had a double strand DNA. I have full blow symptoms that have been somewhat helped but I am housebound and stopped driving due to brain fog and fatigue. I will have to wait until next month to see if I will stay on my current medication or change. Keep a stiff upper lip and keep your spirits up!
Please suggest any better eye drops or solutions for severe dry eyes
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I got negative results for both SSA and SSB, but I seem like having dry eye and dry mouth. Do you recommend me to take the labial gland biopsy test to confirm if I’m actually have sjogren? In order to do this test, should I schedule a rheumatologist?
I was diagnose with sjrogen ssa, bit have syntoms sometime like myastinia gravis, but bloid text neg. Does sjrogen could be in in a group with mtastinia gravis?
Thank you for this video. It was a little hard to understand words because of the echo
Thanks for the feedback ~ I'm working on upping the production value, little by little!
I was just diagnosed with Sjorgens & Connective tissue after being misdiagnosed with Lupus since 2009, I would have positive ANA & the following month Neg after changing Rheumatologist I got Diagnosed with Sjorgens along with Degenerative Bone Disease & connective tissue. Really painful
Thank you!!! I wondered why why do i go.. always ok.. well why? Thats proceedure. Thats not an answer!!
Now 20 years later.. i know why!! Thank you doctor!!! I will now find a new
I was diagnosed with SLE; but my ANA is negative. I was also diagnosed with RA. I do have severe dry mouth, dentist said don’t even need suction because my mouth is so dry. When getting eye exam I was told I have dry eyes. I have severe sensitivity to light and sun sensitivity, I have a red flushing on my face. The sun gives me eye floaters and migraines too. I drink a gallon of water daily and I’m still thirsty! I use Biotene toothpaste and use humidifier because my lips are dry, racked and bleed. I also have axillary masses.
Thank you for your video. I believe this is a possible diagnosis for me. Can you tell me if consistent use of Hydroxychloroquine alters ana blood tests? I've been taking hydroxychloroquine for years due to chronic lyme disease but I have so many new symptoms that are different from my typical lyme symptoms. My ana is always normal. Thank you for your time?