What I Wish I Knew About Sjogren's Disease Before Diagnosis

[@MirinkaArt]

Very interesting video, thank you to both of you. I did the ALCAT test years ago and I found it interesting that years later I connected it with Dr. Peter Dadamo theory of "Eat right for your blood type". His food recommendations for my blood type are almost identical to my ALCAT test. Dr. Girnita YOU ROCK!!! thank you for all the precious info you are putting out there and your open mind. I am binge watching your videos on Sjogren, I am in the process of being tested for it by a neurologist and embarking on a new journey. Again, thank you

[@rheumatologistoncall]

THANK YOU SO SO MUCH for watching my videos! Share with others!

[@TheresePope]

Dr. Wada is incredibly knowledgeable, a strong patient advocate, and have watched many of her informative presentations. She also oversees the Virtual Sjogren's Summit which features fantastic speakers. I was diagnosed in 2020 during the height of the pandemic. Like Dr. Wada, I had dry eyes at least for 10 yrs and my optometrists blew it off as dryness from wearing contacts and allergies. I was dx'd a few days before my 48th bday and throughout my 40s my flu like symptoms and crashing fatigue were blown off as perimenopausal. I also had GI issues leading up to my dx and GERD was my worst. I have also seen multiple specialists during the past 4 years. I was dx'd through labs and am SSA+ and my severe GI symptoms. Thank you Dr. Girnita and Dr. Wada for sharing your personal story as a physician-patient.

[@rheumatologistoncall]

Thank you for watching and your support!!!

[@mylifeisagift]

My optometrist (whose wife had Sjogren's), after looking at my eyes suggested I get tested for it. And voila, sure enough. Otherwise, it would have been many years later before I was diagnosed. How crazy is that? It's been 40 years now. I have lost all my teeth, use heavy drops during the day, ointment at night. Putting in a full day is tiring so I manage my activities. I still enjoy life though.

[@rheumatologistoncall]

It's incredible how a keen eye and personal experience can lead to early diagnosis. Your resilience and ability to manage your activities is truly inspiring!

[@Kendra-xz5mv]

It took me years to finally get a doctor to listen to me. I never felt so good when I was finally diagnosed. Thankyou for this information, as I had no idea what this can do to you.

[@rheumatologistoncall]

Wonderful!

[@laurielaurie8280]

Shared knowledge is a great thing! 😊I was diagnosed with Hypothyroidism when I was young and this year I was diagnosed with Sjogren's. My symptoms were severe joint pain, dry eyes and mouth, stiffness in my fingers and hands, skin and liver symptoms as well. My symptoms seem worse with inactivity. The more active I remain its seems to help with my joint symptoms. I have read where Sjogren's disease is or may be triggered by a virus or bacteria. I have thought in my own case that this could be what triggered my case. I am currently seeing a Rheumatologist. I go for my 3rd visit this month. She prescribed Hydroxychloroquine. I took it for 6 days and had to stop taking it. It made my heart beat faster and made my symptoms worse. I will have to discuss the next line of defense on my next visit. I enjoyed this episode. Thankyou for caring enough to deep dive and discuss autoimmune disorders. It can be such a debilitating disease.

[@rheumatologistoncall]

Absolutely!

[@Cantfindme3]

I have done everything. I have a binder. I go in with all of my medical records and I tell them my concerns and what I want monitored and tested. Nobody listens. Like sincerely this has been years and ongoing for me. I originally went to the doctor for fatigue in 2016. I was at least diagnosed with Graves, but that’s in remission and the treatment did nothing to impact how I feel. This is awful. The worst experience. I don’t have family who will listen to me either, I’m basically left to suffer with no answers. It feels like you’re being slowly allowed to die because nobody wants to slow down and listen to you.

[@rheumatologistoncall]

thanks for watching

[@kimduff4116]

Thank you Dr. Grinita for these wonderful sessions. They are so informative and helpful.

[@rheumatologistoncall]

Glad you like them!

[@christineshields1714]

I've been knee deep in the throes of Sjogren's since 2020. When it hit, it hit me hard. Until that point, I was considered quite healthy. Over the last 4 years I've put the pieces together and realize Sjogren's was on a low simmer most of my adult life. For me, the most serious, potentially life-threatening systemic effect has been my 2022 diagnosis of PAH. Thank you for such an enlightening discussion.

[@China-Clay]

PAH?

[@christineshields1714]

@@China-Clay a form of pulmonary hypertension called pulmonary arterial hypertension. Patients with Sjogren’s are at a significant risk of developing pulmonary diseases, especially PAH. That’s why it is recommended that Sjogren’s patients have annual screenings by a pulmonologist.

[@kimduff4116]

Yes, two years ago I was diagnosed with a spot on my right lung node. I was told it was Sjogren's related. I was told to use cortisone, which my Diabetes is highly sensitive to too. Two years later, my new pulmanary states that the spot has disappeared butnow states I have CVID ( no IgG -low immunity support). Just another step on the Sjogren's ladder.

[@rheumatologistoncall]

Thank you for sharing your journey with us. It's important to stay positive and keep moving forward!

[@China-Clay]

@@christineshields1714 wow, thank you! I have lots of tightness in my chest, I think I will check it out asap!

[@elizabethrussell4858]

Thanks for this brilliant discussion.

[@rheumatologistoncall]

Glad you enjoyed it!

[@heidilanier3090]

I have really enjoyed this session with both you doctors now I just need to find somebody in my area to help me figure out an appointment to get some help

[@rheumatologistoncall]

That's great to hear that you found the session helpful! Finding a local professional should be the next step to getting the assistance you need.

[@Lottesettle]

I am still looking for answers… I had one ANA positive, but I was told on the low side and could not get in with a rheumatologist. No one seems to be listening to my symptoms. You mentioned being fortunate enough to know what labs to ask for, can you share the labs to ask for? It is hard sometimes not to give up and sit back and accept no diagnosis and this is my life now. Thank you for sharing😘

[@rheumatologistoncall]

I'm sorry to hear about your struggles. It can be frustrating when you feel like no one is listening to your symptoms. Hang in there!

[@anniealexander9911]

Can you ask for the ANA to be repeated, as well as the ESR/sed rate and CRP? Given the frequency that sed rate and CRP are ordered in the UK's NHS I assume they must be on the cheaper end

[@TamaraBruce-i9g]

I was 61.when i got dx. I lost my teeth. I told my doctors but no one tested me.

[@rheumatologistoncall]

thanks

[@bjojo2010]

I have been to 4 rheumatologists. One wanted to just say fibromyalgia. I have dry eyes, severe joint pain, feelings of burning inside out, then vasculitis on my arms. My anca, ESR, CRP, all of those tested negative. Last rheumatologist sent me to an eye doctor that recognized what was going on. Last rheumatologist ordered early sjogren’s labs. Bam! Positive. Now headed to ENT for salivary gland biopsy.

[@rheumatologistoncall]

thanks

[@Bizzielizzie462]

Your videos are so helpful. I have not been diagnosed with Sjogrens by my rheumatologist. But my ophthalmologist did diagnose me with show grants so they disagree. I feel like my ophthalmologist is right, but have no idea where to go from here.

[@kimduff4116]

It was my ophthalmologist that diagnosed me too. He sent me to a rheumatologist to get tested and BINGO.

[@rheumatologistoncall]

Thanks for sharing!

[@aradhnachablal484]

Great work. Thx. From seatides, tongaat , sa. 1 week since tornado hit

[@rheumatologistoncall]

Oh wow!

[@Cosmic-lover293]

@dr girnita I found this really interesting. I’ve not been the same since feb 2020, the doctor thinks I had Covid. I’ve had numerous debilitating symptoms, eye problems, double or blurred vision, dry eyes. My mouth is constantly dry, I wake in the night numerous times because my mouth is so dry it’s stuck together and I can’t swallow. Terrible fatigue, this last year being the worst. Debilitating anxiety and panic attacks, worsening over 4 years. Balance problems, burning foot and little toe. Bladder leaking, cramps in my hands, forearms, thigh, calf and feet. Dizziness intermittently. I paid for private appt with neurologist, and diagnosed Hoffmans, possible cervical myelopathy, awaiting CT scan of brain and neck. I haven’t mentioned sjogrens. Should I? I have other medical problems anyway also. Do you think I should mention it at my next appt with neurologist? Thank you 🙏🏻

[@rheumatologistoncall]

Yes talk to your neurologist

[@Cosmic-lover293]

@rheumatologistoncall thank you 💖

[@anniealexander9911]

I don't have any food allergies but discovered that I have been tested 4 times for celiac because I have a chronic rash that "looks" like a celiac rash. Tests are akways negative but doesn't seem to stop them adding a celiac test whenever I need a blood test. Likewise, they keep testing me for RF but it is always negative. Unfortunately that seems to be about as join-the-dots thinking I've ever had. After a one month course of antibiotics for impacted wisdon teeth 30 years ago I've been unable to eat red meat without getting acute diahorrea. My last accidental exposure to beef also caused severe acid and nausea and vomitting.

[@wildanimus2559]

@@anniealexander9911 Alpha-gal syndrome?

[@JayneAnderson-u1z]

I have lived with many of these symptoms all my life. Have there been any studies on Sjogrens and rh negative blood type? I have both.

[@rheumatologistoncall]

thanks for sharing

[@bunnygaffney2765]

Yep. I'm 72 and I've been to many .with no help.

[@rheumatologistoncall]

It's inspiring to hear about your independence and resilience at 72!

[@Jerkat96]

What's the best blood tests to get to test for this?

[@rheumatologistoncall]

thanks for sharing! look at my other videos

[@rhonj4603]

I would love to know your thoughts on LDN!

[@rheumatologistoncall]

they will come soon Thank you for watching my channel!

[@kimduff4116]

I am almost 69. I never had a dental issue in 60 years of life. I have always kept a good dental regime and appointments q 6 months. Braces in high school but everything else was great. Suddenly, I was diagnosed with dry mouth and several cavities. The next five years my issues increased and I had to have two root canals, capping and also my teeth have been chipping. Because of the chipping, it has become hard to bite into thin sliced round pickle in a sandwich. What a domino effect!!

[@rheumatologistoncall]

Thanks for sharing!!

[@janetsplace778]

I had this happen to me. I was tested for a trial. I had one test come back with a false positive. So they kicked me out of the trial. My doctor re tested me and it was fine. I don't understand how one lab says one thing and one says another.

[@rheumatologistoncall]

That must have been a frustrating experience. It's always unsettling when different labs provide conflicting results.

[@anniealexander9911]

In the UK at least we have the problem that a negative test is the end of the road. No retest. But a positive test usually gets a retest

[@mondoe101]

I’m on early stage of Sjögren’s syndrome my mouth very dry and flamy in the morning. So please need your help🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏

[@anniealexander9911]

What has your dentist said?

[@rheumatologistoncall]

thanks for watching my videos!

[@BarbaraGrau-k2l]

Genome wide association studies (GWAS) are surprisingly accurate.

[@rheumatologistoncall]

Thank you!

[@mondoe101]

I need your help please🙏🙏🙏🙏

[@rheumatologistoncall]

thanks for watching my videos!

[@ruthlaity6093]

I have sjorgrens , autoimmune, sicca, rheumatoid osteoarthritis , fibromyalgia and now i am having issues with psoriasis all over and they gave me cream but it doesn’t go away and it smells, is there anything i could ask for or try to help this smelly psoriasis???

[@rheumatologistoncall]

thanks

[@naominimako8564]

@@ruthlaity6093 my son had biologic injection for psoriasis, and it's effective, ask your dr about biologic injection..

[@TamaraBruce-i9g]

How.do you deal with the constant dry mouth. It causes problems swallowing

[@rheumatologistoncall]

thanks

[@MeNotYou72]

Hot potato from one doctor to another, was so accurate for me in rural Ohio. My Rheumatologist had to look up what sjogrens was! My nurse practitioner I saw on a whim was the one who asked the questions that got my diagnosis after 7 years!!! I sure would love to have all those tests and bills paid for, but instead, they'll sit where they are. Seeing she had residency at Wexner, which is 45 minutes from me... How can I get ahold of Dr. Wada?

[@rheumatologistoncall]

thank you for sharing!

[@RachelHarder-rp8io]

Can u test neg for sjogrens & still have it ?? I think I have it unless it’s cancer /lymphoma. I started having severe nerve pain ( docs thought myelopathy ) I have nerve pain all over my body. The test showed nothing so the neuro said it’s small fiber neuropathy which’s causing muscle atrophy. My parotid, lacrimal & sublingual glands swelled & some minor swelled in my mouth along w/ a few small cervical nodes. Then i developed boney knots on both edges of my jaws & torus palatinus in my palate. My face’s A frame but now it’s square bc my jaws are literally growing. I’ve been from doc to doc begging for answers. I’m concerned ab all the lumps but the biopsy of 1 lymph node I had was neg. The doc said it’s fibro after my bloodwork tested neg for autoimmune & sjogrens which o think’s incorrect. Something else’s wrong. Everyone in my family has autoimmune diseases. My bloodwork came back fine. I had protein in my urine. I’m positive my spleen’s swollen but 3 of the docs I told didn’t order any tests to check. I’ve grown to *hate western medicine & finally gave up on trying to get diagnosed bc it was causing too much stress, wasting my time & money. For 2yrs I’ve been living w/a ton of signs & symptoms & can’t get answers. It’s hard to find docs who truly care.

[@rheumatologistoncall]

thanks for watching!

[@rheumatologistoncall]

i have a video about that in my channel, check it out

[@RachelHarder-rp8io]

@@rheumatologistoncall thank u 🙏🏻 I wish u worked here in Florida!! I’ve seen 9 specialists w/ no answers. My rheumatologist finally said it’s fibromyalgia & I don’t believe fibros the correct diagnosis. It’s so hard to find docs who truly care to get to the bottom of a correct diagnosis. If I had the money I’d fly out to see u! I can tell h truly care about ur patients & take ur job seriously! Ur patients are so lucky. ❤️

[@BarbaraGrau-k2l]

I have had allergic reactions that occurred three hours after contact/ingestion/inoculation. When I have had testing done to confirm this, no one waits around three hours to see the reaction and when I tell them I have one, they dismiss me because if I have a true allergy it will show up within minutes not hours. Is an allergy that shows itself three hours later an immediate hypersensitivity reaction or a delayed hypersensitivity reaction and how can I get it properly diagnosed? I have seen allergists-immunologists with little success.

[@charvankerck3426]

sit in their office for 3 to 4 hours . after a test. 😮

[@charvankerck3426]

or get another doc.

[@rheumatologistoncall]

Thank you!

[@bobbiecaress4736]

Could this mimic eplipsy

[@rheumatologistoncall]

Thank you for watching my videos!

[@birsenhayrullahoglu9661]

Sizi anlayabilmem için Türkçe altyazı lütfen , teşekkürler.

[@rheumatologistoncall]

We will

[@TamaraBruce-i9g]

I take a probiotic and a table spoon of mineral oil in juice every day helps

[@rheumatologistoncall]

great!

[@TamaraBruce-i9g]

I cant have the skin testing. My skin is reactive

[@rheumatologistoncall]

thanks

[@MdSakil-bf6wn]

help me........??

[@rheumatologistoncall]

I'm here to help, what do you need assistance with?

[@heather725]

❤

[@rheumatologistoncall]

Thanks