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10 Vital Signs of Sjogren's Syndrome You Can't Ignore

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Dr. Diana Girnita - Rheumatologist OnCall

Dr. Diana Girnita - Rheumatologist OnCall

Күн бұрын

Пікірлер: 675
@moradaforever22
@moradaforever22 4 ай бұрын
I'm SO angry with my rheumatologist right now!! I was given an antibody test recommended by the Mayo clinic and I tested positive for Sjogren antibodies yet he REFUSES to acknowledge the results. Instead he diagnosed me with Polymyositis. Meanwhile, I've been running to a GI specialist, neurologist, OB/GYN, optometrist, hematologist, and even a psychiatrist for all of these symptoms only because my doctor won't believe the results. This is why he asked for the consult with the clinic in the first place, he couldn't figure out what was wrong with me. Even my fibromyalgia, anemia, and depression is because of Sjogren's ??!!!? 😫 ALL I can do is cry right now yet I'm extremely grateful to finally stumble across this video. I'm dealing with kidney dysfunction now and was just talking with my husband about dialysis options . This disease has robbed me of so much that I was feeling defeated. Now, that I know the truth I'll find a doctor who actually will help instead of allowing me to suffer like this
@annahutchinson
@annahutchinson 4 ай бұрын
Get another doctor for sure.
@Lemons2Lemonade2.0
@Lemons2Lemonade2.0 3 ай бұрын
((Gentle hugs)) Ask around and go to someone else! No one is more concerned about your health than you.
@lanamos1094
@lanamos1094 3 ай бұрын
I'm sorry you're going through this. Unfortunately, there's no way to reverse the damage. I now have GY problems because of S'jogrens. Try Humira, it might help slow down with progression. Take care and stay well.
@mjkay8660
@mjkay8660 3 ай бұрын
Find another doctor in Sue the one that refuses to accept the findings
@PerfumedeAlabastro
@PerfumedeAlabastro 3 ай бұрын
La Dra Diana es merecedora de un reconocimiento está muy preparada y es admirable su paciencia para instruir a los a pacientes , si ustedes la pueden ir a consultar no esperen más y háganlo , Por su enorme empatía es que podemos comprender la enfermedad quienes la padecemos 🙏🇲🇽
@SundayzCrows33
@SundayzCrows33 4 ай бұрын
It’s a debilitating autoimmune disease. So glad this disease is getting recognised.
@rheumatologistoncall
@rheumatologistoncall 2 ай бұрын
Thank you
@Huckfintress
@Huckfintress 2 ай бұрын
It is indeed a debilitating disease- it has completely robbed my quality of life. I am 61 and was diagnosed at 46. This is a very serious disease. I am in the midst of filing for disability - I simply can’t function to work anymore. Intense pain and exhaustion/ brain fog and now excessive daytime sleepiness. My dental issues for many years ended up with full prostheses. My feel like someone is hammering them at night. My cough is like that of a daily smoker - and I had a serious bout with pneumonia and a pleural effusion and collapsed lung 2 years ago. I thought I was dying. My SED rate is always elevated and now so is my bilirubin. I deplore this disease and actually think I has this as a very young child. I also have Ankyliosing Spondiltis. Not sure what will happen to me if not approved for disability. My flares are weekly now.
@SandraBonney
@SandraBonney 4 ай бұрын
I have a lot of these symptoms (for years) and when i mention sjogrens to my doctor I'm just treated like a hypochondriac
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
I'm sorry to hear that. It can be frustrating when your concerns are not taken seriously by your healthcare provider.
@barbarawarren9443
@barbarawarren9443 4 ай бұрын
Fire them and get a real doc like this one.
@MsSparkles25
@MsSparkles25 4 ай бұрын
I've been constantly gas light by my doctor for over a year now and it's left me feeling so depressed. I KNOW something is not right with my body 😢
@MsSparkles25
@MsSparkles25 4 ай бұрын
I was diagnosed with MS it took over a year to get a diagnosis but I have All the symptoms of Sjorgen I'm in the UK.
@carolinecoffey5404
@carolinecoffey5404 4 ай бұрын
@@MsSparkles25yes I’m the same it’s soul destroying
@selahr.
@selahr. 4 ай бұрын
It’s sad how many doctors still think Sjogren’s is “just dry eyes and dry mouth” and don’t know or warn their patients about all these other symptoms/complications.
@brendaf3132
@brendaf3132 4 ай бұрын
The patient she describes could be me. What she outlayed was exactly my history. I am 77 and have been misdiagnosed and even mistreated for everything in the book when all I have is Sjogren's disease. The deterioration of the knee joints I have suffered from is not Rhuematoid, nor is it arthritis. It's Sjogren's erosion. I have read that medication to treat our disease is at long last now being developed to help us. I celebrate that finally many younger people will not have to suffer the horrible mistreatment I and millions of others have suffered.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
It's unfortunate to hear about your struggles, but it's great that advancements in treatment are being made for Sjogren's disease. Stay strong!
@Lemons2Lemonade2.0
@Lemons2Lemonade2.0 3 ай бұрын
That’s what I thought it was- just dry eyes and mouth. No one told be different. This information is vital for doctors to know! Things are beginning to all make sense, now.
@cmmsad79
@cmmsad79 3 ай бұрын
I wish I could see a Dr like yourself. My rheumoltologist dismisses me every 6 months and says that my digestive symptoms, extreme fatigue, brain fog and pain are due to something else. Ive had countless tests run by varying doctors but even my gynecologist believes it to all be Sjogrens related. Why is it seeminly impossible to find a knowledgeable and compassionate rheumatologist? Mine gives me my Plaquenil and sends me on my way never listening or helping with my other symptoms. My stomach hurts day and night no matter the diet I eat and my exhaustion makes living a normal life very difficult. I
@AspenCreekLarkspur
@AspenCreekLarkspur 4 ай бұрын
I was very lucky. My dad diagnosed me with Sjogren’s when I was in my twenties. Since I’d already moved away, though, he wasn’t my regular doctor. Since he passed away five years ago, I sure miss being able to call him up with questions. My pain levels have gone way down, by the way, with a carnivore diet.
@Becca0082
@Becca0082 4 ай бұрын
So you eat red meat?
@AspenCreekLarkspur
@AspenCreekLarkspur 4 ай бұрын
@becca4559-yes. Beef and butter. I rarely have lamb since I don’t like it very much.
@Becca0082
@Becca0082 4 ай бұрын
@AspenCreekLarkspur that's amazing. I'm hearing so many great testimonies with carnivore. I feel sick everyday so im considering carnivore. I'm trying to stick with keto but I eat honey. It's probably defeating the whole purpose.......thank you for sharing. God bless
@USAneedsGOD
@USAneedsGOD 3 ай бұрын
Carnivore 1,000%❤
@chavbudgie4299
@chavbudgie4299 3 ай бұрын
@@Becca0082 Red meat is the best, for example from cows, sheep etec, these ruminant animals have four stomachs to detox and ferment out the bad stuff. I live on beef and lamb. I did try a diet of just pork and it had adverse affects, becuase just like chicken, you end up absorbing all the rubbish they eat. In the UK, you can get grass fed beef from Lidl.
@stlounsbury
@stlounsbury 4 ай бұрын
I was diagnosed with Lupus in 2017, and Sjögren’s in 2023. I think people should have autoimmune panel run more often than not, in order to get medication and avoid decades of excessive suffering. Thank you for your thorough coverage of this medical condition.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
I appreciate your support and I'm glad my coverage has been helpful to you.
@Moneymojo6272
@Moneymojo6272 4 ай бұрын
Me too.
@MsLisa0626
@MsLisa0626 4 ай бұрын
I was diagnosed with Lupus and Sjorgrens in 2017.
@KarenSutherland-yv4kv
@KarenSutherland-yv4kv 4 ай бұрын
I was diagnosed with Lupus in 1994. Since then I've been diagnosed with Non diabetic neuropathy, fibromyalgia, RA, vasculitis in muscles and brain, trigeminal neuralgia, virtigo, and lastly I'm now thought to have Sjogerns disease. I also have lost my teeth over the years even though I've never had a cavity as child. Total of four cavities in 20's and 30's. That was explained as side effect of IVG treatments. It seems very common for Lupus patients to end up with a long list of diagnoses over the years. I'm 60 now so almost thirty years of different symptoms and diagnoses.
@stlounsbury
@stlounsbury 4 ай бұрын
@@KarenSutherland-yv4kv I am so sorry that you are going through these illnesses. They are indeed stressing and debilitating. I’ve had some good luck lately with a tiny pinch of prednisone alongside my hydroxychloroquine. I’m a little older than you however I remember symptoms now identified as SLE Lupus, from when I was a pre-teen. I was finally diagnosed when I was 57. And it was my suggestion to my doctor that maybe I have Lupus. Imagine that. So she ran the tests, and there it was. Sometimes you have to shake your doctor up to make them take that extra step.
@christineshields1714
@christineshields1714 4 ай бұрын
Thank you for highlighting the serious systemic issues associated with Sjogren's. I was diagnosed in 2020 after developing symptoms consistent with a viral infection. When the symptoms persisted, my PCP referred me to a rheumatologist as it was suspected that I had an autoimmune condition. I was 62 at the time and considered to be quite healthy before Sjogren's. Since then, I've developed inflammatory arthritis, muscle pain, touch sensitivity, neuropathy, arrythmias, and hypertension in addition to all the dryness issues. Most notably I was diagnosed with PAH in 2022. Although I've been blessed with a wonderful team of physicians, there are too many physicians that know very little about Sjogren's systemic effects. As a patient, it is important to educate yourself about Sjogren's, report all symptoms even if they seem insignificant, and advocate for yourself.
@Tinyteacher1111
@Tinyteacher1111 4 ай бұрын
Same here, except for the doctors.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Thank you for sharing your journey with Sjogren's. It's important to raise awareness about the systemic impact of this condition.
@2069Cal
@2069Cal 4 ай бұрын
I was tested last June for Sjogrens by having a lip biopsy done. The test results were negative. I still have dry eye syndrome, I have fibromyalgia, I have very dry mouth with mapping, now I was diagnosed in January with LSC. Lichen Simplex Chronicus. I also have UC. But my rheumatologist wanted to treat me with Plaquenil but I said no way since I do not have a solid diagnosis. But a lot of symptoms sure heads that way. I’m at a loss……
@beam3819
@beam3819 4 ай бұрын
Since Sjögrens are regarded as a low status women illness little is known by regular doctorss. Even if my dr say I have it, I have never heard of 90% of the symphtoms.
@beam3819
@beam3819 4 ай бұрын
​@@2069CalIT takes years and years, and a good doctor to get the right diagnosis. Its a battle, like with all low status women illnesses. Dont ever give up finding the doctor that finally can help you.
@shellbellhealing
@shellbellhealing 4 ай бұрын
From my experience trauma plays a big role in this as well as gene mutations, vitamin mineral deficiencies and diet. Treat these 4 factors plus incresse gluathione production to cleanse the liver and it becomes much more manageable. All ot these areas of the body are affected by poor methalation. Some meds are actually very dangerous for this like birth control or methotrexate and folic acid cuts off the ability to absorb folate and b12. Often the treatments make auto immune much worse because we are sensitive to everything that the body percieves as foreign. Battling auto immunity is so so disabiling. I pray for everyone struggling ❤❤❤
@Gabby0770
@Gabby0770 4 ай бұрын
Solid advice!! Thank you!
@shellbellhealing
@shellbellhealing 4 ай бұрын
@@Gabby0770 ❤️❤️
@dianewhitlock1917
@dianewhitlock1917 4 ай бұрын
Thanks for sharing❤
@Lemons2Lemonade2.0
@Lemons2Lemonade2.0 3 ай бұрын
Spot on! I have the MTHFR gene mutation. I am overly sensitive to everything under the sun. Thanks for sharing this info! ❤️
@shellbellhealing
@shellbellhealing 3 ай бұрын
@@Lemons2Lemonade2.0 ❣️❣️
@AnilKumar-dk8by
@AnilKumar-dk8by 4 ай бұрын
I accidentally came across your channel. You are too good as you stick to the fact without beating around the bush or giving unnecessary lengthy explanations. You speak short, concise and straight to the point. Hats off to you.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
THANK YOU!!! Love your comment!
@cherylbluestone
@cherylbluestone 4 ай бұрын
11min 35 seconds just because there’s no cure doesn’t mean there aren’t treatments that can help with the symptoms and prevent more serious consequences. This was helpful.
@solromero7415
@solromero7415 4 ай бұрын
I was diagnosed Sjogren's Syndrome in 2023. This channel it's very helpful, thank you.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Glad to help!THANK YOU, more videos will come! this Saturday another video!
@Kimzworld1
@Kimzworld1 4 ай бұрын
I have SS but I went on an elimination diet in Feb & within a week I could have a fan blowing on me & wa la eyes didn't dry out .. My eyes feel wet for the first time in 10 years.. Get off sugar and carbs.
@phoenixphoenix8868
@phoenixphoenix8868 2 ай бұрын
I can literally weep because she is the first doctor who is an expert on this debilitating disease. Thank you a million times over. Thank you for bringing attention to this disease that a lot of professionals and non professionals never even heard of.❤❤❤❤❤❤❤
@rheumatologistoncall
@rheumatologistoncall 2 ай бұрын
Thank you
@mrscowbag1620
@mrscowbag1620 4 ай бұрын
After almost 10 years of suffering and numerous doctors telling me i had fibromyalgia i paid to see a rheumatologist and she looked at my bloods along with the symptoms and diagnosed sjogrens im currently on hydroxychloriquine with no improvement for pain etc i finally received a NHS appointment this week so i thought ive nothing to loose by going after waiting for so long ...she said non of my symptoms were anything to do with rheumatoid arthritis or sjogrens she said she didn't know why id been sent to her and i have fibromyalgia and told me to stop the hydroxychloriquine...she even rolled her eyes at me when i was telling her my symptoms im due to see my private rheumatologist in 4weeks so ill see what she says about it all every day is a struggle but makes things harder when you getting different diagnosis 🤦🙏
@andreacripps739
@andreacripps739 4 ай бұрын
Hi, I am currently waiting for a second opinion with the NHS, they're awful. I roo have been diagnosed with Firbomyalgia but my symptoms just don't fully fit. It's very frustrating. Did Sjogrens show in your blood? mine is negative but lip biopsy showed inflammation in the salivary glands but not enough to diagnose SS, I can see me going private. I really hope you get your diagnosis, it's pure negligence.
@mrscowbag1620
@mrscowbag1620 4 ай бұрын
@@andreacripps739 morning Andrea I've been passed from pillar to post for ages and the last private doc I saw looked at my bloods and said it was sjogrens it's always hard to diagnose I have alot of the symptoms . You must keep trying to get a diagnosis sometimes knowing what you have is a relief because you know what your dealing with .good luck 😘🤞🙏
@jaala1759
@jaala1759 4 ай бұрын
I had an almost similar story. I was diagnosed with polymyositis and had many symptoms of sojourns. My teeth are rotting out. Finally my pcp put me on pilocarpine. My rheumatologist just treat me for fibromyalgia. This is a great video. I’m now on 60mg of steroids which can’t last forever.
@cynthiacrawford6147
@cynthiacrawford6147 4 ай бұрын
Report the doctor for blowing you off( after you get enough diagnosis).
@letriciacreel4268
@letriciacreel4268 4 ай бұрын
Hydroxyclorquin is a horrific Rx. 🛐
@idachau1080
@idachau1080 4 ай бұрын
My friend has been diagnosed with this. She had symptoms for years and finally they have told her what it is..
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
I'm sorry to hear about your friend's diagnosis. It must be a challenging time for her.
@bkm2797
@bkm2797 4 ай бұрын
Really appreciate what you have shared about sjogrens, I may have it and it began 30 years ago, but I became so beat up by doctors because my symptoms were all over. I did have all kinds of blood test, my thyroid crashed with hashimotos, I had sicca syndrome, my eyes are so incredibly dry, vision really blurred, all kinds of cavities and root canals, with some strange bony like growths on my gum line. In the beginning I ran a low grade fever 99 to 101 daily for several years, I became peri menapausal at 36 and stopped having periods all together at 40. I used to walk to work every day for 7 yrs. without any problems, but once this began I started to lose feeling in my feet, developed significant shin splints and shut muscles down in my legs, I had to stop walking. Also developed COPD, a hiatal hernia (food was constantly getting stuck in my throat, which is really painful). Muscles and tendons are a mess, I keep getting horrible spasms even around my midsection, Charly horses in my calves and hamstrings, hands etc. I had chronic anemia, my brain feels horrible with all kinds of migraines, heavy fog and a floating like sensation, ptosis, eye bleeds where a vein pops and a sac of blood forms, some form of arthritis, super dry skin, multiple chemical sensitivities. In the beginning a positive ANA 1-640, chirossis, and many other positive test, it's just been a nightmare. One important caveat, When I was about 30 I stupidly got breast implants because I was so small, a triple A on the Right and a double A on the left, it was less than a year after I slowly began to develop this nightmare list of symptoms. One was ruptured and they both burned my chest wall all the time so I had them removed and did not replace them hoping I would get better. I now have ptsd dealing with physicians so I gave up going, I'm 68 now it's certainly been a humbling experience but listening to your video I may get up the courage to try again. Thank you so much for addressing this issue.❤️👍
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Thank you for sharing your story. It sounds like you've been through a lot, and I appreciate you taking the time to watch my video.
@tracieelrod7018
@tracieelrod7018 3 ай бұрын
You just described me … I’ve completely given up on Doctors and the fatigue is mind blowing it completely stops your world… but I want to feel better I’ll be 50 in a few months I would love to have my life back ..
@bkm2797
@bkm2797 3 ай бұрын
tracieelrod7018, Really sorry to hear that you are suffering too. There are good doctors out there, but financially they are out of reach for me anyway. Did you get breast augmentation, or are and if so, did you get them removed? Or is it that my symptoms without the above sound like yours?
@apollonia6656
@apollonia6656 Ай бұрын
Yep, all the symptoms and more in my case, but doctors just think it is fibromyalgia or simple ignore the whole picture. All my life I have been suffering with every symptom you can mention and now palpitations and nausea are out down to anxiety ! Had a "Stroke" but the pain in my eye ,temple and right face was dismissed. Now I have stabbing pains in my eyebrow and temp!e but it is put down to hayfever or sinus probs. Agonizing pain in the temple really is ki!king me and what am I prescribed: Statind and blood thinners ! Honestly,why add to my pain ?
@bkm2797
@bkm2797 Ай бұрын
apollonia6656, Sorry to hear you too are going through this life challenge. What's helped me the most is yoga and meditation, these are two things you can benefit from greatly because they help your mental state that the illness and the lack of physicians leave depleted! I wish I had more to offer, please know that I believe you, and hope you find the support you deserve.👍💕🙏🏻
@mtntm5628
@mtntm5628 4 ай бұрын
As a long time Sjogren’s and SLE patient, I find this video absolutely the most informative and comprehensive on Sjogren’s disease and I appreciate your thoroughness. I knew Sjogren’s was so much more than dry eyes and dry mouth, but there are still things I learned from this video. I’m looking forward to checking out your library, there’s clearly much more I can learn. Thank you.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
THANK YOU, more videos will come! this Saturday another video!
@annegreen9499
@annegreen9499 4 ай бұрын
I’ve had a sjogrens diagnosis for 25 years, post pregnancy, after many false diagnoses & mislabelling. Unfortunately here in Scotland a Sjogrens diagnosis is just another label. I’ve got almost all of the 10 signs that u mention, thankfully not lymphoma, but post diagnosis I was told it was a very minor issue & have spent that last 25yrs treating the symptoms & battling it myself. It’s ruined my life & led to chronic disabilities. Thank you for your videos they are very informative. I only wish rheumatologists here took this condition seriously rather than treating it as a non-issue & largely psychological in nature.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
I'm so sorry to hear about your struggles with Sjogren's syndrome. It's unfortunate that the condition is not taken seriously in some places. Stay strong!
@sd4beatsmore
@sd4beatsmore Күн бұрын
Well ain't it a fact, the great British NHS (complete BS) I'm also treated the same as yourself or more to fact not treated. Fibromyalgia has wrecked me over the years, now I'm older (60 male UK) I swear this FMS has put 15/20yrs on me and somedays I can barely function at all. ❤
@TheresePope
@TheresePope 4 ай бұрын
Thank you, Dr. Girnita. This was one of best rheumatology-focused videos about the overview of Sjogren's. Your video was shared in my online Sjogren's support group and plan to watch more of your videos. I was dx'd in 2020 during the height of the pandemic. My worst symptoms were GI and GERD. Right now, I have been experiencing shortness of breath due to exertion and have undergone extensive pulm and cardiac testing. Like the patient you discussed, all my symptoms over the years were blow off as perimenopausal and had dry eyes for 10 years. I was diagnosed a few days before my 48th birthday. I have lost count of how many specialists I have seen. Thank you so much for sharing your knowledge and enphasizing that Sjogren's is a disease and not a syndrome. We need more informed and educated rheumatologists out there like you who dont dismiss this disease as a nuisance "sicca" diseases!
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Thank you so much for watching my videos! please share them in your community!I have many videos!
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
THANK YOU, more videos will come! this Saturday another video!
@mddlvr
@mddlvr 4 ай бұрын
This is me!!!! Just got thrown from 1 doc With pills to another. I was originally told I had lupus and RA. Severe pain couldn’t walk and debilitating fatigue (sleeping for days on end) not exaggerating. running low grade fevers. It was a 3 year nightmare! I wish I could find a Doctor like you in my area that actually listens and cares! I had a wonderful rheumatologist but she moved away.
@user-nm5ob9kk5p
@user-nm5ob9kk5p 4 ай бұрын
I have sjogrens and RA. I'm always looking for information videos. I appreciate your educational videos thank you.
@Tinyteacher1111
@Tinyteacher1111 4 ай бұрын
Me too!
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
THANK YOU, more videos will come! this Saturday another video!
@abdawson79
@abdawson79 3 ай бұрын
My goodness! These are all symptoms I have! I just recently started having dry eyes and mouth. I have pretty much everything else. I was diagnosed with fibromyalgia. I’ve tried going to the cardiac doctor cause I am constantly having weird sensations in my heart and lightheaded feelings, my chest always feels like I have a chest cold. I could go in. I would live to visit you who understands this! I’m in the DC area and have given up on doctors as they always tell me I’m fine. I’m emotional about this video because it gives me hope and makes me feel validated.
@user-lo7zn5pr3p
@user-lo7zn5pr3p 3 ай бұрын
Wow i thought you were describing ME specifically! Its so good to feel like I'm not crazy! Now, to actually get a doctor to believe me!
@chaseroflight
@chaseroflight 4 ай бұрын
This is a very important teaching program! Your introductory statement included "It is not in your head." That is such a powerful and comforting truth to hear. With my own constellation of symptoms and few positive blood tests to "prove" disease presence, I just continue trying to cope with extreme fatigue and muscle pain, along with many other multi system symptoms. I am most curious about your mention of IGg antibodies (precursors to lymphomas and myeloma) as I have MGUS. I am wondering, as I have always suspected, if there is any known connection. Most of all, I would like to thank you, Dr. Girnita, for making me feel seen, even as I struggle to find more and appropriate help for my health challenges.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Thank you for sharing your experience and thoughts. It's important to feel seen and validated in your health journey.
@debramendelson9344
@debramendelson9344 2 ай бұрын
Yes...was originally told Fibromyalgia. Have Formally been diagnosed with Scleraderma, Sjorgens, Fibromyalgia,Getds, Raynauds. To say the least many years of frustration & exhaustion. However....i am on my 21 st year of being a Warrior! Your video was Amazing and so needed. I also now realize my " flares" have been my Sjorgens....not Fibro.
@rheumatologistoncall
@rheumatologistoncall 2 ай бұрын
Thanks for sharing
@RollinWithRosie
@RollinWithRosie 4 ай бұрын
I have recently been diagnosed with Sjogrens, and i love you channel it is very informative, thank you
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Thank you ! You have many videos about Sjogrens
@cechzc2e
@cechzc2e 4 ай бұрын
I am a 56 year old male, and I present with all these symptoms. I have been complaining to my doctors for ages, about my symptoms (which may not be sjogren, but presents the same symptoms), but the GP practices are to lazy to refer me, just simply appease me with basic tests, then tell me everything is fine. What advice would you give me please?
@joannalynn3848
@joannalynn3848 4 ай бұрын
I started having arthritis when I was 16. At the same time my brother started having rheumatoid arthritis problems. They diagnosed his rheumatoid arthritis pretty quickly but I was 53 and had arthritis so bad my legs were permanently bent and I was in a wheelchair before I was sent to a Rheumatologist and diagnosed with Sjogren’s Syndrome. I had had to go on disability at age 50. So I clearly had it for many years before diagnosis. It flared up once so bad, after I knew I had it and was taking Hydroxychloroquine, I had the butterfly rash on my face which usually goes with Lupus, and although I felt just like I normally do, I lost 1 to 2 pounds a day between Thanksgiving and New Year’s Day. I was overeating just like I always do at the holidays. I usually gain 10 pounds. But I lost 50 without dieting. Some people asked me how I lost so much weight. I told them I was on the cinnamon roll diet (my mom worked at Whataburger and we would eat a cinnamon roll almost every day). They said “Does that work?” I said “no”, I was sick! Now Sjogren’s is at it again and I’ve been losing a pound a day. I’ve been feeling real bad this time.?We’ll see how it goes.
@RapturereadyNOW
@RapturereadyNOW 4 ай бұрын
Wow! I gained a ton of weight in a yrs time but was thin my whole life. I was eating poorly but I thought but I thought it was a med i was on. But all of a sudden my weight started dropping. I lost 100 lbs in a yr. I thought it was bc I stopped this medication. Maybe it wasn't related bc I've been diagnosed with sjrogrens syndrome. Thx for sharing.
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
Thank you for sharing your journey with us!
@jazziez6467
@jazziez6467 4 ай бұрын
not sure how long this bucket of illnesses getting a name but good luck getting diagnosis in your 5 minute dr visit
@melt2947
@melt2947 4 ай бұрын
There’s a blood test
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
It can definitely be frustrating to navigate the world of diagnoses, but don't lose hope!
@bagpussozzy9594
@bagpussozzy9594 4 ай бұрын
On the NHS you only get 5 mins and allowed to talk about just one health issue or one symptom. If you are lucky you may get two appointments in a month. So calculate how many appointments a person will need to get through the symptoms of sjorgens. By then the GP has already forgotten or started to overlook the first symptoms you came in with a year earlier
@nancneumann4196
@nancneumann4196 3 ай бұрын
Cut to the chase. Please request ANA blood test on your next dr visit. (Anti-nuclear antibody test) ...if you suspect an auto immune problem and have a bunch of weird seemingly unrelated symptoms.. this will save everybody time and confusion
@cherryseptember8697
@cherryseptember8697 3 ай бұрын
@@bagpussozzy9594 Yes, I also live in the UK and like you, have found the NHS particularly unhelpful. What you say about seeing GPs is completely true because they just haven't got the time to spend on you if your problems are not easy to diagnose. In addition, it is extremely difficult to see the same GP so you have to repeat what you said last time, with each new GP seemingly incapable of reading or understanding your medical notes. You go to them for help but end up wanting to pull your hair out! I've had a strange mix of disorders for over 40 years (I am 66 years now), especially the very dry mouth, sores on my tongue which often make eating and speaking painful, difficulty swallowing, getting out of breath on the slightest exertion, plus fatigue and exhaustion, sore eyes and problems with my eyesight and when I tried to breast feed my daughter 33 years ago, my breast milk just wasn't good enough for her and the Health Visitor advised me to feed her formula milk instead. I also have abdominal problems, which I've had all my life from babyhood, and painful wrists and thumbs which have started in the last 5 years. No doctor has been able to explain what is causing these things and I've sometimes been treated like I'm either mentally ill or just making it up. Although some NHS doctors have been rude to me , for eg one young GP shouted at me "Go home and be useful!" others have been kind and tried to help. However, besides depression, no GP or specialist has been able to give me a diagnosis that brings these strange symptoms together or to find any treatment that alleviates them. Some days I feel like I''m a freak! However, today may be my very lucky day! This video covered many symptoms that I've had for ages. It might be another dead end, but Sjorgens might just explain things! Thank you to the doctor who made this informative video and thank you to bagpussozzy for your accurate assessment of NHS appointments. Keep strong and never surrender!
@lostippe
@lostippe 4 ай бұрын
This is wonderful! I was diagnosed almost 20 years ago and wish that my doctors, including the rheumatologists that I have seen, would watch this video! I’m so grateful that you highlight the other symptoms, beyond dryness and the systemic issues!
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Thank you for sharing your experience! It's so important to raise awareness about all the symptoms of this condition.
@moviemaker159
@moviemaker159 4 ай бұрын
Why do GPs refuse to acknowledge this, the symptoms are quite obvious.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
It's frustrating when doctors overlook obvious symptoms. Have you tried seeking a second opinion?
@moviemaker159
@moviemaker159 4 ай бұрын
@rheumatologistoncall Thank you for your reply. A blood test showed sjrogrens syndrome but antibody convinced her I haven't got it. My symptoms are many and quite bad at the moment. I can hardly stand up and brain fog in the mornings.
@joyperez2430
@joyperez2430 4 ай бұрын
Very important, infections but ALSO VACCINATION can activate, cause a flare, worsen, and even cause this and/or any other autoimmune condition, specially if the vaccinations are too often and with little periods of time between each shot
@truthwanted5438
@truthwanted5438 3 ай бұрын
Every Autoimmune Disease needs tested for if you have been diagnosed with one. Another Autoimmune Disease will usually follow another.
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
It's important to stay on top of your health and get tested regularly if you have an autoimmune disease.
@Sparkplug4712
@Sparkplug4712 3 ай бұрын
I felt like you were describing me to the exact T !! Everything stated I've been suffering thru for a good 20 yrs. The last 3 yrs I've been hospitalized too many times and each time they don't know what to do because they don't know what is causing all my health issues. My eye surgeon has told my doctors that I have been suffering with this yrs hence why I've had multiple eye surgeries. But the primary doctor refuses, and the rheumatoid specialist refuses to believe the surgeon. Meanwhile, I'm decaying rapidly and am at the point that I keep praying for the Lord to take me home. Prayers for all who have this, I know what you are all going thru 🙏
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
I'm so sorry to hear about all the challenges you've been facing. Stay strong and keep fighting!
@polytheneprentiss1534
@polytheneprentiss1534 20 күн бұрын
I feel very fortunate that my PCP (who I had for about 30 years) right away tested me for Sjogren’s antibodies. It was negative, but now I’m getting a lot of more tests done by a rheumatologist.
@rheumatologistoncall
@rheumatologistoncall 19 күн бұрын
Thanks for sharing!
@lanamos1094
@lanamos1094 4 ай бұрын
I want to add from my experience. This disease effecting your teeth. Spent a lot of money for on dental implants. Three times they failed to fuse with the bone. Save your money. I also developed holes in my teeth. Didn't have any choice but to put crowns on all of them. Find knowledgeable dentist.
@Tinyteacher1111
@Tinyteacher1111 4 ай бұрын
Yep! Money!!!
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
THANK YOU, more videos will come! this Saturday another video!
@BJM217
@BJM217 4 ай бұрын
My experience exactly. Dental implant did not take and also have had my crown and bridge removed and five teeth removed.
@carolinecoffey5404
@carolinecoffey5404 4 ай бұрын
Yes me too I’ve lost 7 teeth so far and more are loose gum disease loss of bone in jaw
@cindileeminks-yi8mz
@cindileeminks-yi8mz 4 ай бұрын
What kind of lymphoma is the usual with Sjogrens ? Non Hodgkins or Hodgkins?
@AJN_71
@AJN_71 2 ай бұрын
I have Sjogrens and it’s been so bad for years and I’m not getting any help from the specialist where I live. U have made me feel sane for the first time in a long time. I feel like I’m going crazy.
@rheumatologistoncall
@rheumatologistoncall Ай бұрын
Thank you for watching my channel!
@sarahk4047
@sarahk4047 3 ай бұрын
Thank you for saying “its not in our heads” the moment you said out I knew that you care about your patients ❤ I was diagnosed with Sjrogrens, Lupus SLE and lung disease 🥰 I’m going to subscribe thank you❤️🇦🇺
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
That's so kind of you to say! I truly care about my viewers and their well-being.
@maryshanley329
@maryshanley329 4 ай бұрын
A good ophthalmologist should easily diagnose this. I has a great eye doc who had done his residency at the Mayo Clinic.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
It's so important to have a skilled ophthalmologist for your eye care needs.
@bettyboo1519
@bettyboo1519 4 ай бұрын
@maryshanley329 I totally agree with you, I'm UK, but after yearly Eye Test, I was showing problems. So much so I was sent for MRI Scan, then rushed for ACDF Procedure. Problems are still ongoing, but I'm in system. It's frustrating, knowing I feel so unwell, but having to put up with it, in past I've put everything down to Fibromyalgia, after having Operation to fix plate and screws in neck, I think we all need to look further into problems, Don't put everything down to 1 condition, as I had done since 2015. Wish you well @maryshanley329 also Everyone else suffering.
@frauschmidt4353
@frauschmidt4353 4 ай бұрын
Danke, dass Sie Ihr Wissen so offen mit uns teilen. Ich bin ebenso betroffen, zusätzlich Relapsing Polychondritis. Diese Informationen sind so wichtig für uns. Aber auch für Menschen, die zufällig drauf stoßen und sich darin erkennen oder einfach nur Menschen, die dann vielleicht nennt Verständnis für Menschen mit vielfach Erkrankten aufbringen. Ichs habe mir den Kanal schon lange abonniert. In Deutschland findet man keine Aufklärung in dieser Qualität. Einfach auf den Punkt gebracht. Lieben Dank!!!
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
thank you
@frauschmidt4353
@frauschmidt4353 3 ай бұрын
Genau so ist es.
@HardLifeLessons
@HardLifeLessons 3 ай бұрын
I think everything I’ve been going through for the last 6 years is finally making sense. I’ve been tossed around from dr. to dr. and each one gives me a different diagnosis. It’s driving me crazy. What testing can be done to prove beyond a doubt that it is Sjogren’s?
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
I'm sorry to hear about your struggles, but it's great that you may finally have some clarity on your condition.
@wandamalone3549
@wandamalone3549 7 сағат бұрын
I was diagnosed several years ago. I lost my health insurance so I have not been able to see a rheumatologist. I just managed it with over the counter meds as much as I can.
@MardiesPlace
@MardiesPlace 4 ай бұрын
Thank you sooooo much Dr. I truly believe I finally found an answer to my questions! May G-D continue to bless you and your work!
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Thank you
@jolenecreech7648
@jolenecreech7648 Ай бұрын
I have Sjogrens. My head aches so bad. My dentist thinks I may also have TMJ. How do I get my rheumatologist to believe me and my level of pain ? I need relief. 🥲. She indicated that Sjogrens affects BELOW the neck; not the head. I do take Hydroxy, Pilocarpine, and Baclofen. I have learned so much from your channel, Dr. D! Thank you from the bottom of my heart! 💜
@rheumatologistoncall
@rheumatologistoncall Ай бұрын
I'm sorry to hear about your struggles with Sjogrens and TMJ. It can be frustrating when your healthcare providers don't fully understand your pain. Hang in there, and keep advocating for yourself.
@dotstickler79
@dotstickler79 4 ай бұрын
I’ve discovered in research that hat carnivore lifestyle can greatly improve and at times bring healing from this.🙏🏻
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
That's amazing! It's always fascinating to hear about the positive impacts of different lifestyles on health.
@Zoleankico4267
@Zoleankico4267 3 ай бұрын
I’m not sure what’s going on with me, these symptoms sound a lot like what I’m dealing with; but I started with my diet, and I feel much better when I cut out sugar and dairy. I too, have heard great things about carnivore diet.
@USAneedsGOD
@USAneedsGOD 3 ай бұрын
Carnivore 1,000% totally more than helpful❤
@sarikagupta1752
@sarikagupta1752 4 ай бұрын
Very informative. Many of us didn't know about sjogren's syndrome . But you have really put everything so detailed and easy to understand. It's really a complex syndrome that completely shakes u . Thanks for sharing
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Glad it was helpful!
@MimiJoys
@MimiJoys 4 ай бұрын
I have Fibromyalgia and Sjogrens. Lifemis not easy. I had to quit working in 2012 and my quality of life is pretty lousy. I'm so exhausted most of the time. I can't hardly sleep at night due to feeling sick to my stomach, and I rarely feel like doing much of anything.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
I'm sorry to hear about your struggles. Hang in there!
@beefstew4698
@beefstew4698 4 ай бұрын
I am suffering with you 🙏
@user-bv9sd2xt3p
@user-bv9sd2xt3p 4 ай бұрын
Very informative video. Does sjogrens cause burning feet also? I have lots of those symptoms but it all started with burning feet. The dry eyes and mouth came later, but I am told they are menopause symptoms.
@mickeyhoward5791
@mickeyhoward5791 4 ай бұрын
Burning feet would be a type of peripheral neuropathy, which is a common symptom of Sjögren’s. I have a lot of neuropathy in my feet as well. Sometimes it is a burning sensation, sometimes tingling, sometimes aching, but always some level of numbness. And I also had the neuropathy in my feet (along with the muscle aches and fatigue), long before the dryness and other issues, @user-bv9sd2xt3p.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
YES, watch my next video is about that!
@Nanacansew
@Nanacansew 4 ай бұрын
@@rheumatologistoncall which video. I have many symptoms plus feet burning and the doctors are unsure of what to do. I have the blood markers as well. Yet they just say they aren’t sure.
@rhiannancaraway
@rhiannancaraway 4 ай бұрын
I was told by the last rheumatologist I saw that I possibly had Sjogrens but as they typically do, they dismissed me. My feet burn so badly. It used to only happen during episodes of Raynaud's but now it's all the time. I am so defeated by begging for help for years and being handed antidepressants instead.
@belinda-janekent-brown4494
@belinda-janekent-brown4494 4 ай бұрын
From a continent away .Thank you for your informative talks. Love it that you say " stay curious" for with chronic diffuse conditions it helps so much to find out as much as one can.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Wonderful!Thank you!!!!
@khaos1999
@khaos1999 4 ай бұрын
Thank you for this video! I am currently getting ready to make an appointment with a rheumatologist and an endocrinologist. I found a new PCP who listened to me. I participated in Ramadan and was trying hard to find ways to mitigate the extreme dryness but eventually my throat gave up. It took a week to recover my voice fully and feel relatively normal again. I did finally see an eye doctor, 2 kinds of dry eye. Dental issues my whole adult life whereas when I was a kid I had none. It's just been an ongoing thing. I remember you mentioning hand and wrist issues in a video. In both wrists, I have had a total of 10 injections in my wrists and bilateral carpal tunnel. My next step is endoscopic correction of "mommy thumb" once these shots wear off. I BARELY produced breast milk for my baby and it destroyed me mentally for months. I tried everything, hydrating, body armor, lactation cookies and candies and everything. It ruined my mental state.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
It sounds like you've been through a lot, but it's great that you're taking steps to address your health concerns. Stay strong!
@clancycreations
@clancycreations 4 ай бұрын
Thank you so very much! 💜👍 This couldn’t be more on point. And I’m nearly 46. Still feels like a worthless hunt for help even with a diagnosis. Drs seem to want “easy.”
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
I'm glad you found the video helpful!
@lorim805
@lorim805 4 ай бұрын
I was diagnosed with Scleroderma, Rynauds, and hypothyroidism in the 1990’s. They said at this time I had that with the dry eyes dry mouth. Now the doctor just say it’s because I have all the medicine I’m on. They did the biopsy years ago and I have the small nerve neuropathy. You were right about the gabapentin. I’ve been on that for years. I just got a Spinal Cord Stimulator to try to see if it will help because I don’t want another fusion on my back. I’m so confused because I know something’s not right and I’m not sure exactly what to do about it. This scleroderma attacked my lungs a few years ago. so now I have 40% scar tissue. I’m on immunosuppressants, two of them. I also have fibromyalgia. I’m having so many problems with my nerves and I see a pulmonologist, rheumatologist, cardiologist, neurologist, and everyone sort of just waiting. I understand it’s hard to fix some thing before it completely breaks, but oh my gosh, this is getting worse and I know it and I’m not sure exactly what to do about it. Your video really was so comforting. Thank you so very very much. I’m going to watch all of your videos.
@beam3819
@beam3819 4 ай бұрын
Thank you so much for sharing. My md say I have Sjögrens but have not given me a diagnosis nor any treatment. Never knew there are so many serious risks. Norway
@margaretr5701
@margaretr5701 4 ай бұрын
It's fortunate you received a diagnosis from your MD, it's difficult to get illness such as Sjogens acknowledged. Can your MD give you a referral to a specialist?
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
It's important to stay informed about your health condition. I hope you find the right treatment soon.
@lisatravers3351
@lisatravers3351 4 ай бұрын
Well to be honest there's no treatment really! At the end of the day you have to understand what are your triggers with me was long periods of stress! Most importantly keep inflammation down and that's an art in its self 👌 good luck
@Lemons2Lemonade2.0
@Lemons2Lemonade2.0 3 ай бұрын
Luckily I had a functional medicine doctor who ran tests, and we discovered that I have Sjogren’s and a bunch of other autoimmune diseases (Lupus) But this information in the video blows my mind! I didn’t realize the seriousness of it, and I don’t think she knew, either.
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
It's important to have a doctor who runs thorough tests to get to the root of health issues.
@ehtx1
@ehtx1 Күн бұрын
Just diagnosed with Sjogren's. Have joint pain and back pain too. Thank goodness my blood tests didn't show any malignancy but did show decrease kidney function with I worried about. Seeing a kidney doctor now.
@rheumatologistoncall
@rheumatologistoncall 11 сағат бұрын
I'm really sorry to hear about your diagnosis. It sounds like you're going through a tough time, but it's good to know that your blood tests didn't show any malignancy. I hope your visits with the kidney doctor go well and you find some relief soon.
@wiccanmoon0001
@wiccanmoon0001 4 ай бұрын
What is the treatment for this illness? I think I have been misdiagnosed as having fibromyalgia or can you have both?
@RapturereadyNOW
@RapturereadyNOW 4 ай бұрын
I'd love to known that as well. I'm diagnosed with both. I wonder if it's just sjrogrens syndrome. My back pain is the worst and it sounds and feels like trigger points so I fig it was from Fibromyalgia. IDK if you get that that with sjrogrens syndrome or not. And I'd like to know what are people prescribed? Anything?? And are there certain supplements we should be taking?
@heidipritty1428
@heidipritty1428 4 ай бұрын
Wow, thanks Doctor . Everything you said sounds like my life.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
THANK YOU, more videos will come! this Saturday another video!
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
It's amazing how relatable some advice can be!
@kimskorner
@kimskorner 4 ай бұрын
Wow! I have had Sjögren’s syndrome for years, I have these issues but did not know it because of Sjogrens because doctors down play it as just dryness. Thank you so much for addressing my concerns. It’s not all in my mind. ❤
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
It's great to hear that the video helped address your concerns about Sjögren’s syndrome. You're not alone in facing these challenges!
@h_l177
@h_l177 4 ай бұрын
كمريضة شوغرن شكرا من اعماق قلبي. فيديو اختصر المرض بشكل احترافي ارجو ان يكون مرجع للمرضى الذين لم يكتشفوا المرض وكذلك الاطباء حتى يشخصوا بشكل اسرع ودقيق
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Thank you so much for your kind words! I'm glad the video was helpful to you.
@kittttcattt
@kittttcattt 3 ай бұрын
I WAS DIAGNODED WITH MS BUT EVERYTHING ALL 10 I HAVE. It doesn't matter now my doctor do not care or are uninterested in helping. I new it was something else and this appears to be all my signs and symptoms, atleast I know I'm not crazy.
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
I'm sorry to hear about your diagnosis. It's important to find a doctor who will listen and help you manage your symptoms.
@StephStruble
@StephStruble 3 ай бұрын
Wow, i have been diagnosed with this but i never knew all of these things go with it. Now it all makes sense. Thank you Doctor!
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
It's great to finally have some clarity, isn't it?
@earthn1447
@earthn1447 4 ай бұрын
These symptoms mimic many diseases - But most doctors do not FIRST ensure patients have working CO detectors - These symptoms are similar to low level Carbon Monoxide leaks especially from gas water heaters or gas furnaces. Random bad headaches are key!
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
It's so important to raise awareness about the dangers of carbon monoxide poisoning.
@denise3808
@denise3808 4 ай бұрын
You’re a breath of fresh air ! Do you have this condition ? If not your a very caring Dr .
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
I dont have this, but I am here happy to help people!
@salwasaied2998
@salwasaied2998 3 ай бұрын
Thanks for the informative video. I was diagnosed with RA 3 years back but my symptoms had started several years back. Today after I watched this video I noticed that I have most of those symptoms! today I did imaging for my hands and wrists, will wait for the results and come back later. Thanks again Doctor,,appreciated.
@SusanRubner
@SusanRubner 5 күн бұрын
Excellent, informative video. Was diagnosed 2 years ago by my wonderful P.A. Have had symptoms for years. One has to adjust to it all.
@rheumatologistoncall
@rheumatologistoncall 11 сағат бұрын
thank you
@newtexan1
@newtexan1 3 ай бұрын
I have SS. My rheumatologist is great. I have RA and Have OA. I described my symptoms to him and I suggested that I may have SS. I asked him if he could test me to look for markers of SS. It came bavk positive. Both of my daughters have juvenile RA . I had them tested for SS as well. Only one daughter has it. You’ve got to be diligent and pray your doctor listens.
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
It's important to advocate for your health and seek the right tests. Wishing you and your daughters the best in managing your conditions.
@karencampuzano9374
@karencampuzano9374 2 ай бұрын
I also have red, burning feet, symptoms seem worse in winter, other symptoms are joint pain , and neuropathy . I was diagnosed with Sjogren's in 2007, but really thought it only affected the eyes, and salivary glands. Doctor, you are a blessing, thank you for spending your time helping address this disease, very informative and supportive, I appreciate everything you do , thank you again 🩻🩺🙏
@rheumatologistoncall
@rheumatologistoncall 2 ай бұрын
It's amazing how diseases like Sjogren's can have such varied symptoms. Hang in there, you're not alone in this journey.
@marciasimpson8852
@marciasimpson8852 2 ай бұрын
Hello. I have the same problem. I was diagnosed with erythromalagia. Its heat related. If you get it winter, could be socks and slippers. For me its outside in heat and also in winter with slippers. Soak feet in cool water, it helps
@lynnmac6494
@lynnmac6494 3 ай бұрын
At 40- I went to an eye specialist due to corneal abrasions & light sensitivity. They were sure I had sjogren's. An ANA test came back negative, so they dismissed it. After cataract surgeries at 51, the repeated retinal tears, a complete retinal detachment, recurring uveitis, and tooth erosions- I still have no diagnosis.
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
I'm sorry to hear about your medical journey. It must be frustrating not having a clear diagnosis despite experiencing so many symptoms.
@carolmckeehan228
@carolmckeehan228 4 ай бұрын
joggers. SO special we need more doctors like you 😊❤. Thank you. 😊
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
thanks
@phillipklingeman1651
@phillipklingeman1651 4 ай бұрын
Vitamin E helps a lot but proper amount also check for low grade infection’s and gut health but I’m not a doctor so check with yours that what helped me
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
It's great to hear that Vitamin E has been helpful for you! Always best to consult with a healthcare professional for personalized advice.
@bridgetadarkly3598
@bridgetadarkly3598 Ай бұрын
I started getting symptoms at age 12 to 15. Went to tons of doctors during HS and sabotaged me big time. The dry eye has been excruciating. I wasn't even diagnosed until I was 23. A horrifying and lonely path. It took me until about 2022 to find some effective treatments.
@rheumatologistoncall
@rheumatologistoncall Ай бұрын
Thank you for sharing your thoughts
@noneofurbusiness5223
@noneofurbusiness5223 4 ай бұрын
Yup. On wkend sleeping 28-32/36 hrs! Not a lot of housework gets done.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Thanks for sharing! Sometimes we all need those marathon sleep sessions.
@aprilgarnett55
@aprilgarnett55 4 ай бұрын
I have all the symptoms, occurring after Covid infection. I have Long Covid, but i tested negative for Sjrogrens, however i have all the symptoms getting worse, but none of my doctors seem to be able to help my LC or any of the issues that i have. I have a clean diet, take supplements to try to mitigate but im at a loss.
@jadedandcynical-sc9ri
@jadedandcynical-sc9ri 4 ай бұрын
Same here.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Thanks for sharing that!
@sharronkeeler789
@sharronkeeler789 4 ай бұрын
There are many long covid conditions that have been helped or cured by nicotine. Nicotine gum or patches are very beneficial. There is no addiction from this treatment as the addicting ingredient in cigarettes is not nicotine. It is another additive.
@pamelaabettis7225
@pamelaabettis7225 4 ай бұрын
I was grateful to be Dx w/Sjorgren’s. I even had a misdiagnosis with a parotid gland Bx. Since my symptoms did not improve and I was only sleeping 3 hours a night because of my pain. (As a nurse this was NOT enough) So my Family Dr sent me finally to a Rheumatologist and he found the poor interpretation of my Bx. Because I was in my 40’s my Bx only showed inflammation but they were expecting WBC infiltration like a 60 year old.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Good to be in the right direction
@ScienceOfReadingTeacher
@ScienceOfReadingTeacher 2 ай бұрын
It could also be menopause as brain fog, not finding your words, fatigue, dryness...lack of estrogen - she could be combination of peri-menopause along with sjogrens.
@rheumatologistoncall
@rheumatologistoncall 2 ай бұрын
Thank you for sharing your insight on menopause and its symptoms!
@joannalynn3848
@joannalynn3848 4 ай бұрын
I have Sjogren’s Syndrome but also anytime I try a new hobby any joint involved becomes inflamed. I also have other symptoms that lead me to believe I may have a connective tissue disorder. Tendons in my feet and ankles calcify to the point that I ruptured an Achilles tendon just playing with my dog in my living room. The other one started feeling the same way so the podiatrist operated on it before it also ruptured. Also had surgery on other tendons and have had to surgically remove knots of calcium off other areas of my feet. My knees became so bent I was in a wheelchair. We have a shortage of Rheumatologists in Eastern Oklahoma, so unfortunately I have not been able to see one since 2020. I also have pleurisy for the second time in my life.
@dianesilla3432
@dianesilla3432 4 ай бұрын
Thank you so much for your video-it is the best information I have found on Sjogrens since I was diagnosed last year. I started having symptoms 5-7 years ago, but explained them away as depression, hormones running amuck, perimenopause, etc. I was so grateful to finally get a diagnosis & start treatment. However, over the past year I’ve had doubts about my diagnosis. When I initially saw my rheumatologist, I was convinced that I had SLE. I had learned that connective tissue disease ran in my father’s family, & that he had also had SLE. My symptoms were consistent with SLE, including a malar rash, which looked like rosacea. However, my labs were negative for Smith & Anti-DNA. (SSA was positive, hence my Sjogrens diagnosis.) Except for a little dryness of my lips, I’ve never experienced the symptoms of primary Sjogrens. I understand that Sjogrens usually occurs along with SLE or RA. Is it possible that I still have lupus, even though the associated labs were negative? Is it important to get this diagnosis corrected, as long as I’m receiving treatment (hydroxychloroquine)? What I didn’t know before your video, is that Sjogrens is not JUST dryness. Over the past year, I have experienced lung problems like you described (shortness of breath, dry cough, hoarseness) & a couple years ago I was also diagnosed with MGUS, which means I have some risk of developing MM. My voice has become very hoarse. My pulmonary work up was not conclusive, although ILD & cancer were ruled out. Your video has convinced me that I do have sjogrens, even though I don’t have the typical dryness. Should I still be concerned about SLE, or does it matter?
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
More videos are in my channel and more will come!
@TLTSofit
@TLTSofit 3 ай бұрын
Some of my symptoms from having CRPS always make me wonder if it’s something else or just the crps- very similar symptoms to this i experience but I’m certain mine are just crps symptoms
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
It can be tough when symptoms overlap, but staying in touch with your healthcare provider is key.
@eeyoregirl622
@eeyoregirl622 4 ай бұрын
I was diagnosed in 2017 with fibromyalgia, no blood work no imaging just touching my back told me don't bother with ssa. I had a back injury in 2014 so pain gets dismissed as that. My knees wrists even elbows shoulders hurt all bigger joints, and even small joints in fingers. Dry eye was commented last eye exam, i keep glasses on at night to block any air like fan. Eye drops burn my eyes told ingredients likely try different ones. Dry mouth, my teeth are falling out, cavities, root canals, i feel a crack starting on one tooth it is going to do what its twin did on other side, half tooth fall right out of mouth. I have a tooth broken in half in the back broken off from where I had fillings 3 decades ago. I have a lot of these symptoms, and other autoimmune. Positive ana titer and i am blanking on the speckle pattern, i think this was one snd lupus ra and i forget what was but i read 5 things that had that pattern. I am told nope i don't have any of them as i am talked down to by a dr who thinks i just want some label so i can get ssi. The dr who ordered the ana dismissed it as so many have a positive and completely fine. She is no longer with my clinic. Fear and anxiety of having my health dismissed has kept me from finding a new primary, i don't know what to look for. I know just because i watched a video on 20 symptoms of ME, snd I have 19, many all at once, does not mean I have it, same for this, lupus, ra, ms. My ex was triggered by my symptoms, his mom had ms, he saw too much same and i guess she was mean, so he started being verbally abusive. But just because so many of my symptoms is shared by everything autoimmune does not mean i have them all. I am diagnosed with fibromyalgia, alopecia areata, adrenal insufficiency, lab tests back it up corrisol too low for a value at 8am, hypothyroidism, multiple high pth, and endocrinologist was certain i had it first time even though the value went down so that when it was repeated it was high, also high prolactin high parathyroid, and with cortisol repeat acth was done also very low. Many other tests done over time too many to list, just pointing out ana titer and the ones endocrinologist did this year as he is new. Anything able to cause a false positive urine test for alcohol the ES level was elevated not EG, if i remember the letters correctly. I don't drink...at all. Unless my ex spiked the lavender syrup i put in my lavender tea at night. All i drank when he was arrested. I do know he took time to sabotage my paper shredder, he did keep vodka in the kitchen, but i also noticed the alcohol reading was done a few weeks later than the rest of the drug screen, i have never failed a test in 10 years of getting pain medication, switch if pain clinics after my partner pushed for it to happen, he pushed for a lot of change. This dr wants to take all pain meds away that old clinic had me on for years, was not on immediately after my back injury, it was months, when nothing else helped, 4 to 5 months maybe. Yet this pain dr says my brain will take over once they are gone. Already struggling to be mom. We eat lunchmeat sandwiches every night because i can't stand and cook, heart rate climbs and fitbit gives me credit for working out...while i am standing still. And i start sweating. Dizziness when i bend down might wipe me out with a concussion, this wave has been several days already, i have gone months before, and no one to drive me. Ugh going to stop already typing for over an hour.
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
I'm sorry to hear about all the health challenges you're facing. It's important to find a healthcare provider who listens to your concerns and takes them seriously.
@suzanneladue5828
@suzanneladue5828 16 күн бұрын
Thank you for saying it is actually a complex disease even my board certified rheumatologist doesn't seem to be taking it seriously
@rheumatologistoncall
@rheumatologistoncall 13 күн бұрын
Thank you for your comment! It’s crucial for us to shed light on these complex issues, and I appreciate you being part of the conversation.
@PerfumedeAlabastro
@PerfumedeAlabastro 3 ай бұрын
Apreciable Dra , Que es o cómo saber que un paciente tiene enfermedad pulmonar intersticial ?? O cómo se conoce el Diagnóstico de el paciente con el padecimiento pulmonar intersticial que especialista lo descubre o que estudio ???att paciente con síndrome de Sjogren desde Ciudad de México 🇲🇽🙏
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
Thank you for reaching out with your questions. Diagnosing interstitial lung disease can involve a variety of tests and specialists, so it's essential to work closely with your healthcare team.
@arlenegerred3683
@arlenegerred3683 2 ай бұрын
Hello I saw your video. I have Sjogrens I am also a celiac. I investigated the other diseases that go along with celiac Sjogrens is included in this my dentist many months ago. I can't find any drs to help me. I am Canadian and desperately need help. Last year I had my aortic valve replacedy dry mouth is feeling being scorched and my lips stick to my teeth during the night. I have 24 signs and symptoms of this. I am a retired nurse and getting help is very important Are you able to help me.
@rheumatologistoncall
@rheumatologistoncall Ай бұрын
I'm so sorry to hear about all the challenges you're facing. It's important to seek professional medical help for your condition.
@LindaPerry_337
@LindaPerry_337 5 сағат бұрын
My eyes have been feeling drier lately, my joints have felt inflamed, hot and painful, my mouth is more dry. I know the root cause of these symptoms and it that I have been eating more simple carbohydrates lately. And gluten, which I have an intolerance to. I have been having these delicious pastries twice a week and a date slice as well, for about a year now. I didn't eat this much simple carbohydrates in the past. But I am going to reduce this consumption of these gorgeous pastries to once a month only. And have almonds and an apple in their place. These symptoms of mine will reduce dramatically. 🙂❤️🙋‍♀️
@JG-ph3xg
@JG-ph3xg 3 ай бұрын
I quit going to the Dr. And rheumatologist. They think it's all in my head even though I tested positive for sjogrens back in 2006. I have had diarrhea for over 20 years, vertigo for the last 10 years and debilitating aches that move around for no apparent reason. I have had weird skin rashes and alopecia. After thousand of dollars in dental care, I figured out chewing gum frequently through out the day and brushing and swishing with hydrogen peroxide ( don't swallow) instead of toothpaste has fixed the dental decay and have had perfect exams for nearly 3 years now. I currently have inflammation in my hip and can barely walk with a cane......
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
Sorry to hear that!
@serenasmith7885
@serenasmith7885 4 ай бұрын
I was diagnosed with SICCA Syndrome in 2023. I believe, after watching this video, that i have had this since i was in my late 20's to early 30's but was diagnosed with Fibromyalgia instead. SICCA is the evil twin of Sjogrens but without the autoimmune component. I had the lip biopsy done last October to verify whether or not i had the autoimmune component. It was negative. But i still have to deal with everything else. I feel like im dehydrating from the inside out. 😢. I can't even cry anymore because my eyes are to dry. Having to have teeth pulled because it has affected my mouth so badly and my breath smells horrible. Plese tell me there is a treatment somewhere out there for SICCA SYNDROME. 😢😢
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
www.thorne.com/u/RheumatologistOnCall
@allyallyoctenfree
@allyallyoctenfree 4 ай бұрын
Literally the story of my life. Over the last 12 months have rapidly deteriorated. Can't seem to get access to the right specialist because apparently Western Australia doesn't have them, systems aren't taking patients etc. I'm not even 40. I'm debilitated to the point i Can't go on. I have EVERY SYMPTOM! Except Lymphoma (but maternal uncle was recently diagnosed with stage 4, soooo... ) i also think i have Ehlers Danlos, in addition. But i have NO idea who to see for a proper diagnosis. 😢
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
I'm sorry to hear about what you're going through. It sounds incredibly tough. Have you tried reaching out to different medical centers or specialists for a second opinion?
@allyallyoctenfree
@allyallyoctenfree 4 ай бұрын
@rheumatologistoncall I've been through several. Am currently trying again... it's an affordability and access issue, unfortunately 😕
@michelerthornton5885
@michelerthornton5885 4 ай бұрын
Thank you Doctor. Not enough research on our disease. However I feel like the mumps I had in 1967 has something to do with making our salivary glands deficient to the point we end up with countless cavities and countless sore throats. Take care.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Thank you for sharing your insights. It's important to consider all possible factors when it comes to health issues.
@TrudyContos-gq1bw
@TrudyContos-gq1bw 4 ай бұрын
I am very grateful for your information that can help others before it gets so far that causes such disabilities. Thnk you
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
You are very welcome
@janedoe4858
@janedoe4858 4 ай бұрын
Thank you Dr. for this very valuable info.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
Glad it was helpful!
@macalaban2405
@macalaban2405 4 ай бұрын
Another beautiful vedios thank you dr.
@YasminFlower88
@YasminFlower88 9 күн бұрын
Wow, seeing this video all puzzle peaces of all the symptoms I have fall on it's place! I will make an appointment with my doctor and tell her I want to get tested on this disease. To be honest, I already know that this is my problem. It's going on for years, but all my symptoms have never seen by the doctor as coming from ONE thing.
@rheumatologistoncall
@rheumatologistoncall 11 сағат бұрын
thank you
@Trish-ck7eo
@Trish-ck7eo 3 ай бұрын
I had this disease all of my life, but didn’t know it until my 40’s. I am now, twenty years later I’m just now learning that it’s been a large part of my health issues and I have a long list of health problems. Yesterday I just found out that my Mitral Valve prolapse can be caused by Sjogren’s Disease. And if that’s not enough last September I went to the hospital because of Heart Failure and Acute Kidney Failure and a few other issues. In my learning session yesterday my CKD can be because of Sjogren’s as well. I am thankful for this video and the comments from others. I feel that living with Sjogren’s is like walking in a field of land mines as you never know what is going to happen from one day to the next.
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
Thank you for sharing your story. It's important to raise awareness about these health issues.
@pennyc11
@pennyc11 4 ай бұрын
Very grateful for your videos. I realize now why some symptoms are worsening. Hitting 60, some I have learned is age related but I have had problems with them earlier. I had an MRI about 5 yrs ago because aunt died of Alzheimer's. Great Psy book explained how it develops and how drs know. I look okay. My memory problems can be traced back to Sjogrens. It has been confusing for me. First diagnosed with FM. Symptoms increased when bio changes, puberty, hitting 30. My immune system was worn out. Too many illnesses. I need to be kinder to myself. O had thr worst anxiety going back to College lately. My recall memory was very bad. Even though I studied so much. My whole body was going haywire. As we know, this happens when we fall out of alignment. I needed more help and sadly had a teacher not sensitive to disabled students. I realize I could have asked counselor to include notes for my tests. I barely passed. Normally an A/B student. You are wonderful and thank you. It means a lot to me to ne able to teach. Illness put so many of my previous skills out of reach and brought a lot of sadness into my life. Accepting limitations and that asking for reasonable accommodations is not a weakness but a necessity. Education is important no matter what a person does. It is important that we find our place in the world and not isolate ourselves too much. I feel a little better today thanks to your great explanation and useful suggestions. Oh, I find coq10 as useful. Sadly expensive but it can be purchased on sale or with subsidies. It makes a difference for me.
@rosemorris7912
@rosemorris7912 4 ай бұрын
I have a sister with this. I have crest syndrome, which has many of the same symptoms.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
It means a lot to have someone close to you who can relate to your experiences. Thank you for sharing.
@barbaraharris6102
@barbaraharris6102 4 ай бұрын
Great review. For years I have had dry eyes and dry mouth. I had a history of autoimmune hepatitis that resolved after a 6 week course of steroids years ago. Labs now showed elevated ANA, CRP, ESR but neg SSA and SSB. A few months ago because of dry cough and SOB I was diagnosed with Interstitial lung disease from a High Res CT. The pulmonologist was sure it was autoimmune and ordered an early Sjögren’s lab panel. This came back positive. Why is this not routinely ordered in patients with symptoms of Sjögren’s but negative SSA and SSB?
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
THANK YOU, more videos will come! this Saturday another video!
@janc6219
@janc6219 3 ай бұрын
Ihave sjorgen fibromyalgia arthritis hypoparathyroidism and limited systemic sclerosis. And doctor are so rude and mean that i have decided to stop seeking medical help id rather die than be treated like I'm crazy
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
I'm sorry to hear about your experience with doctors. It's important to find healthcare providers who are understanding and compassionate towards your conditions.
@belovedchaos1
@belovedchaos1 4 ай бұрын
As always such an informative and important video! Thank you for making this one. ❤
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
You are so welcome!
@CremeBrulee543
@CremeBrulee543 3 ай бұрын
Thank you for this video! It took me 7 years to get my diagnosis
@rheumatologistoncall
@rheumatologistoncall 3 ай бұрын
I'm so glad this video could help you on your journey!
@ruthjansen1670
@ruthjansen1670 2 ай бұрын
Good morning Dr I came across your video and realized that this actually what is going on. I am on Eltroxin 50mcg, Celebrex, Vit B 6, Omez, Texa, and VenlorXR 150mg. Sometimes my BP is over the top and sometimes I'm Hypotensive. At some stage I was prescribed Metatraxate... which cause severe Motion sickness. What other kind of Rx will you advise? Ruth South Africa
@rokuranda8694
@rokuranda8694 4 ай бұрын
Dr Girnita, do you recognize the connection between Sjogren’s and Lichen Sclerosus. Dermatology told me it is autoimmune inflammation. Rheumatologist said there is absolutely zero connection. Thank you.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
I am not aware
@rebeccaflores2118
@rebeccaflores2118 4 ай бұрын
I have all the sjorgens 10 symptoms and it is now that I am understanding my pains and suffering. I have CKD stage 3, fibromyalgia and the numbness , tingling sensation on my hands and feet and legs and all if my he 10 symptoms you discussed. I was thnking Lupus at first as my mother died from it last n 1984 at 65, but since my eyes and lips are really a problem ever since, so there is a name for it and now I am so scared. I am 78 years old and a resident if Las Vegas, Nevada. Where are you located, if I could be seen by you, iI would be most grateful or if you have a Rheumatoid Clinic that you can refer me. I am on Humana Insurance. Thank you very much. Just watching your informative videos and I find hope and cure for this sickness through you. Again, thank you.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
I'm glad my videos have been helpful to you. It's important to stay informed and seek medical advice for the best treatment options.
@annsmarpat9500
@annsmarpat9500 4 ай бұрын
What if I can't find a good or competent rheumatologist near me? I live in WNY. 😢 I haven't been able to work since 2013.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
I understand your concern. It can be tough to find the right specialist, but don't give up!
@carolinecoffey5404
@carolinecoffey5404 4 ай бұрын
My rheumatologist tried to do 2 failed lip biopsies as my blood work normal still have all the symptoms of Sjogrens my eyes are chronically dry, had test done at eye clinic and came back no fluid, eye inflammation, dry mouth, dry sore vagina, joint pain, yes had swelling in neck, you name it but getting help is ridiculous
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
I'm sorry to hear about your struggles with getting a proper diagnosis and treatment. It can be incredibly frustrating when you know something is wrong but can't seem to get the help you need.
@dcslye8330
@dcslye8330 4 ай бұрын
Thank you so much for all that you share! Always so informative.
@rheumatologistoncall
@rheumatologistoncall 4 ай бұрын
You are so welcome!THANK YOU, more videos will come! this Saturday another video!
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