How I Was Diagnosed With Sjogren's Syndrome | Balanced & Blissful

[@viridianduchess]

I'm so glad you were able to advocate for yourself. I'm a medical laboratory scientist....we are the people that perform your laboratory tests. The lab's motto is "without us you are just guessing" referring to your doctor. What people do not realize is that the lab generates over 70% of diagnostic information. I'm also going through the autoimmune disease path.

[@tudormiller8898]

I'm a man and I think I have Sjogrens Syndrome. I always suffer from dry mouth, dry eyes, skin rash, fatigue, IBS and arthritis. Great video, really informative. Watching from London.

[@rreddy4640]

What eye drops do you use for severe dry eyes and fatigue

[@ErikMarie]

I felt this waaay deep down. I was diagnosed in college as well when I started seeing a different doctor and she actually listened to all my symptoms and sent me to a rheumatologist. After testing and a lot of discussion I was diagnosed with Lupus and Sjogren’s and we figured I probably should have been diagnosed as early as middle school but my pediatrician insisted I was faking/liked to complain. 🤦🏽‍♀️ I’m thankful it wasn’t something more serious (not to say that it isn’t but you know).

[@MollyKateMcCarthy]

It’s such a shame that doctors don’t listen to younger patients! I am so glad you were able to get your diagnosis and hopefully get help for it.🤗Autoimmune diseases aren’t easy to deal with but we are badasses for doing it💪🏼

[@ErikMarie]

Balanced & Blissful I shouldn’t have been surprised, that doctor also missed a collapsed lung because I was faking 🤷🏽‍♀️ it just makes us stronger in the long run 😁

[@surfergurlzrock]

Thank you so much for sharing your story. I’m a med student who was (finally) diagnosed after a nearly 10 year journey of trying to figure out why i was so tired and brain-foggy all the time. I always wrote off the tiredness as depression and the dry eyes as being up to late, or staring at screens too long, or my glasses being the wrong prescription. It wasn’t until I had a few bouts of neuropathy (bells palsy and half my foot going numb) that I finally got a work up. Initially it was for MS until they got my antibodies back and found +SSA and a whooooole bunch of other ones. That was in 2018. Since then because of covid and moves and other things, I finally got a great rheumatologist who was able to say what’s wrong with me. I’ve been scouring the internet for days and yours is the first story I’ve came across where the patient was less than 40 years old and didn’t have the typical presentation that I’m learning about in medical school. So, again, thank you so much for sharing your story. I feel so much less alone than i did this morning ❤

[@byronic0967]

I think I might have sjogren's. Tbh the part that scares me most is not being able to work full time because of fatigue. I worry alot about my future and people don't understand when I say I am tired :(

[@sfcc-itsanewday6389]

Ask your PCP for an ANA panel- or order your own through Quest Diagnostics and pay out of pocket- if it’s positive, you’ll need to see a Rheumatologist for additional testing /autoimmune panel.

[@josephine2610]

A brilliant summary of a wide range of symptoms,am 83yrs old,retired nurse.Dry eyes since 30 yrs,partial thyroidectomy 30 yrs ago,Multiple multiple infections,mainly chest.Dry mouth nasal passages,airways.extreme,extreme,fatigue,Doc just thinks it's ANXIETY.Have never had any type of medication ,sleeping tabs etc.This is going on for years.Weary of it all

[@leslieisepic]

I have been dealing with GI issues (gluten intolerance), swollen glands, and joint pain for the past 2-3 years. Finally found a primary to take me seriously despite relatively normal labs (albeit low or high within normal range). Also a negative ANA, which can happen with some autoimmune diseases, especially if you are early in or presenting with mild symptoms. But I just had my first appt with my rheumatologist and she ran 12 more tests despite the negative ANA a week ago. I just got those results back and I am positive for sjogren antibodies and another autoimmune that causes blood to easily clot (putting me at risk for blood clots). My RF a few weeks ago that my primary ordered was right at 14, highest in normal range. I also have raynauds that affects all my fingers, thumbs, and toes and some fingers are more affected. I have really been feeling the fatigue, chest pain, and joint pain a lot since May. The GI has been a struggle since early 2019. I am glad you figured everything out so soon.

[@MiryamGonzalez-jw8ho]

Hil! Do you have Sjögren’s Disease? Clinical Outcomes Solutions, a healthcare research company, is conducting research into SjD through a one-time remote interview. Eligible participants will be compensated for time and effort. You may be eligible if: • Be 18 years of age or older • Have a clinical diagnosis of active systemic (i.e., extra glandular) Sjögren’s Disease for at least 6 months • Can converse in and read the English language with sufficient fluency to participate in an interview and read the documents used during the interview • Do not have another rheumatic or inflammatory disease (e.g., rheumatoid arthritis, systemic lupus erythematosus, scleroderma, inflammatory bowel disease) • Do not have another disease that causes widespread pain or fatigue symptoms (e.g., multiple sclerosis or fibromyalgia) • Able and willing to participate in a one-time, audio-recorded remote interview This research is confidential. Any contact information you provide will only be used for the purposes of compensation and interview scheduling. Please contact us at [e-mail]

[@edgu71eg]

I'm going through diagnosis testing right now. Been slowly dying of this all my life 😪 the fatigue is overwhelming!

[@lucyroyal3565]

I was dx with Dermatomyositis and Sjögrens in 2011. It’s been a bumpy road, yes people think that you’re faking it, with me I can’t fake a horrible rash and muscle wasting. Thank you fir sharing. Blessings 🙏🏻❤️

[@sandycombs5419]

Your story is similar to mine. I'm not as young. I was sick all the time too and I still get sick every so many weeks. I was told I was crazy and it was stress and my panic attacks. It was a neurologist who found mine. I was having chronic optical migraines throwing up blood for 2 years straight. I would go in and out of hospitals, but not one doctor would listen to me. I was told I had allergies that's why my eyes and mouth were so dry. I was told to brush my teeth after each meal. I was so drained, exhausted, fatigue, so sick. I told myself no one can have a stomach flu every 4 to 6 weeks. I could write a book on everything that I went through and how I was made to feel. Long story short a 3rd neurologist I went to go see had me see this new LPRN and she ordered a autoimmune panel. I did a 6 week follow up with him and he said the LPRN quit, but here are my labs and he wasn't sure why she ran all these labs but I had something called Sjogren's and he didn't know what it was. I was positive for RA as well. So the neurologist sent me back to my primary where she didn't understand Sjogren's either. She sent me to a Rheumatologist and I would be her 2nd patient with Sjogren's. I live in Nevada where doctor's, dentist and even Rheumatologist are not that educated on Sjogren's. I now am living with 7 autoimmune diseases. I'm not crazy as they all thought I was. The relief of now knowing I knew something was wrong was the biggest relief. I never had the chance to tell that LPRN thank you. If it wasn't for her I'd probably still not have a diagnosis. This year 2021 I was diagnosed with my 7th autoimmune disease called dermatomyositis. I worked in the medical field for 17 years and I knew I wasn't crazy. I know everyone has stress. My job I loved and my home life was fine too. My husband kept telling me not to give up. He knew I wasn't crazy. If you read this never give up like she says if you don't like one doctor find another. I kept going to different neurologist. The pain in my eyes was unbearable. I now know I was having optical mini seizures from Sjogren's. That's where the spitting up blood was coming from. I now have answers that took me from 2008 to 2017 to get diagnosed. I'm now medical retired.

[@MiryamGonzalez-jw8ho]

Hil! Do you have Sjögren’s Disease? Clinical Outcomes Solutions, a healthcare research company, is conducting research into SjD through a one-time remote interview. Eligible participants will be compensated for time and effort. You may be eligible if: • Be 18 years of age or older • Have a clinical diagnosis of active systemic (i.e., extra glandular) Sjögren’s Disease for at least 6 months • Can converse in and read the English language with sufficient fluency to participate in an interview and read the documents used during the interview • Do not have another rheumatic or inflammatory disease (e.g., rheumatoid arthritis, systemic lupus erythematosus, scleroderma, inflammatory bowel disease) • Do not have another disease that causes widespread pain or fatigue symptoms (e.g., multiple sclerosis or fibromyalgia) • Able and willing to participate in a one-time, audio-recorded remote interview This research is confidential. Any contact information you provide will only be used for the purposes of compensation and interview scheduling. Please contact us at [e-mail]

[@extraordinaryamy4573]

Thank you for sharing your testimony! Such a powerful statement.. advocate for your health and listen to your body. If I didn’t I’d be taking meds for a disease that is far from what I have 🤦🏼‍♀️ my doctor sincerely thought a therapist was what I needed but I knew something was up. You are a tough young lady keep it up💪🏼👍🏼

[@MollyKateMcCarthy]

Extraordinary Amy thanks so much for your comment! So important to advocate for yourself!

[@leanne.2180]

This is extremely comforting thankyou!. I am waiting for a referral to rheumatology, its in process!. I have dry eyes, extreme fatigue, constant sinus infections and dryness dwn below but never had a dry mouth or joint pain.... I'm pretty sure I have Sjogren's but I'm waiting for the specialists to say it first. Managing symptoms and not knowing is tough!!

[@stephaniesuazo5755]

Thank you for this video, I recently got diagnosed with Sjorgens syndrome. I have a negative ANA but positive Anti SS B and Anti SS A. My blood count was also high. I also have pretty much all sjorgens symptoms.

[@MiryamGonzalez-jw8ho]

Hil! Do you have Sjögren’s Disease? Clinical Outcomes Solutions, a healthcare research company, is conducting research into SjD through a one-time remote interview. Eligible participants will be compensated for time and effort. You may be eligible if: • Be 18 years of age or older • Have a clinical diagnosis of active systemic (i.e., extra glandular) Sjögren’s Disease for at least 6 months • Can converse in and read the English language with sufficient fluency to participate in an interview and read the documents used during the interview • Do not have another rheumatic or inflammatory disease (e.g., rheumatoid arthritis, systemic lupus erythematosus, scleroderma, inflammatory bowel disease) • Do not have another disease that causes widespread pain or fatigue symptoms (e.g., multiple sclerosis or fibromyalgia) • Able and willing to participate in a one-time, audio-recorded remote interview This research is confidential. Any contact information you provide will only be used for the purposes of compensation and interview scheduling. Please contact us at [e-mail]

[@ciansmith6659]

Thank you for sharing - I have all the same symptoms and lots of doctors ignored my ailments. Take care. Cian xx

[@coleworldcole9438]

Girl I wish I found your video at the beginning of my journey. Great advice here

[@MiryamGonzalez-jw8ho]

Hil! Do you have Sjögren’s Disease? Clinical Outcomes Solutions, a healthcare research company, is conducting research into SjD through a one-time remote interview. Eligible participants will be compensated for time and effort. You may be eligible if: • Be 18 years of age or older • Have a clinical diagnosis of active systemic (i.e., extra glandular) Sjögren’s Disease for at least 6 months • Can converse in and read the English language with sufficient fluency to participate in an interview and read the documents used during the interview • Do not have another rheumatic or inflammatory disease (e.g., rheumatoid arthritis, systemic lupus erythematosus, scleroderma, inflammatory bowel disease) • Do not have another disease that causes widespread pain or fatigue symptoms (e.g., multiple sclerosis or fibromyalgia) • Able and willing to participate in a one-time, audio-recorded remote interview This research is confidential. Any contact information you provide will only be used for the purposes of compensation and interview scheduling. Please contact us at [e-mail]

[@toryberch6345]

Thank you for posting. There aren't enough personal stories for Sjogren's on KZbin. I was just diagnosed last October with Primary Sjogren's. My symptoms I thought were more rheumatoid arthritis for several years but then when I realized that I couldn't cry anymore when I should have been able to then I knew it was something else. It took a lip biopsy for me to be diagnosed. Nothing ever comes up in my blood work

[@MollyKateMcCarthy]

Tory Berch thank you for sharing your story!! It’s so interesting how symptoms and diagnostic tests differ person to person. Sjogren’s definitely isn’t talked about enough, so I’m try to do my small part to change that! Thank you so much for watching & commenting...I love connecting with other people who get it!

[@toryberch6345]

@@MollyKateMcCarthy your welcome, and something to work through is the crash and go symptoms. So frustrating I know. Your other chronic illness video showed you already know. For me the plaquenil is what worked for the pain and swelling. I'll have to try the elderberry syrup 😊

[@MollyKateMcCarthy]

Tory Berch yes, definitely! I take plaquenil as well. Learning to deal with symptoms/flares is definitely an ongoing process!

[@toryberch6345]

@@MollyKateMcCarthy it is for sure!!

[@sfcc-itsanewday6389]

I’ve been curious as to why onions do not make me cry for years- just received my Sjogren’s diagnosis today.

[@Jax-jx5uu]

thank you for sharing and for being so thorough in your explanations. i have my first appointment w/ a rheumatologist in 2 hours and am expecting next steps to solidify a diagnosis. hearing others talk about their experience helps me feel not-so-alone. TY ✨

[@growinglove9216]

Very informative, my doctor says I don’t have it but all my symptoms point that way, so confused

[@malaaak2194]

Same

[@puddincakes1005]

Me too!

[@kristineanderson4983]

At age 71 I am finally figuring out why I never feel well. I am seronegative and started with RA and Raynaud's, but had bad TMJ in early high school. My grandma had Lupus -- I have the face rash but I don't burn so I don't have Lupus, but a doctor once told me I did. My mom had JRA. My Sjogren's symptoms are progressing fast right now. No saliva, no tears, peeling face (and I'm a lotion freak). It's scary because I'm already in an electric wheelchair and I don't have a way to get out of town to see a rheum. My family thinks I'm complaining so I haven't even told them.

[@aquilaclark814]

Thanks so much for your video and your explanation of how you got your diagnosis ..I screenshot it ..and I’m going to show it to my endocrinologist..🥰🥰

[@kathleenharris3403]

I think I should be (lab lost results) tested again...I have dry nasal cavities, dry and light sensitive eyes, peeling lips, joint pain, fatigue and dizzy spells, ibs, esophageal probs. with especially peanut butter!

[@KiwikimNZ]

Very informative thank you. I am trying to get a diagnoses. Have dry eyes which has caused ulcers on my cornea leading to eye sight problems, swollen face on one side like you, feeling very fatigued, unwell all the time, joint pain etc. have had positive Ana twice and inflammatory markers high. They are not taking me seriously and it’s very frustrating. Thank you this has helped x

[@lauraelisa1601]

I had pain for years, I went to a million doctors and they all always said I was crazy, and the pain was probably my mind playing tricks on me, because of the stress. Even I was convincing myself that I was creating that pain. I couldn't make sense of it, because every time my pain came from a different place. So, in 2018, I was 17 years old, I was graduating from high school, and that year I got sick many times, I had parotitis, took antibiotics, but months later it developed into pericarditis. I cried a lot that year, but on the last day of school, we had a farewell day, and I wanted to cry, but my tears wouldn't come out. After that I had to go to the cardiologist for follow-up, I told him everything I was feeling and he said I should go to a rheumatologist. At my first appointment my rheumatologist said I probably had sjogren's syndrome, and i was relieved. At that moment I hoped that my tests had come back positive for that hypothesis, because that would mean that I wasn't crazy and the pain and lack of tears were real. 4 years later I'm here, always going to the doctor to adjust the treatment, but in the last few months more symptoms have appeared. Now I'm feeling tired, a lot of pain, headache, dry eyes that often hurt and look like a balloon, a little mouth dryness, parotid pain, dry lips, nausea, constipation and depression which increases the manifestation of fatigue. I'm trying to deal with all the discomfort and continue my activities for the day, but some days that's really hard, mainly because I don't think anyone really understands how I feel, and I don't want to put myself in a victim position, but sometimes, not even myself, can understand how in one minute I can be fine and the next start feeling pain. Living in this cycle made me look for videos to try to find people who feel something similar, and could say something that would make me understand better what I feel, so thank you very much for your videos.

[@t-.-t.]

Also keep your vit D levels at the best possible levels. Low vit D is the major cause for most autoimmune disease and inflammation.

[@Iseeit4u]

It makes me so mad that they don't really listen! Took years after a lab showed sjhorens antibodies. Said "just dry eyes, mouth" you'll be fine. Thankfully his RN listened last yr when I said I didn't feel real. She literally low key chewed him out and said I needed another panel run. I already have graves, raynauds, rosacea. Took me literally half out of my head at times, headaches and pain when breathing in to be heard!

[@DaydreamAllday]

It's crazy how often medical professionals gaslight their patients. I hope you're doing better.

[@raagaviduraisamy7262]

I'm so happy to see your video.. Im feeling lonely having this at young age... 😞😞

[@kellieblondel1466]

Thank you for making this

[@Miss.queenof]

Thank you for your information,

[@leavesofthetreehealing3211]

I was diagnosed with hypothyroidism, but the medication (rather than supposedly fixing my fatigue) made me even more exhausted. I had dry eyes, and dry mouth, and dry, cracked skin because I always feel dehydrated now. I have to constantly drink water, etc. I also have back pain but maybe it's unrelated. I have light sensitivity, which I had no idea was related to Sjogren's. I'm also a woman over 40. So last week I went to the clinic trying to figure out what is going on with me that the hypothyroid medication wasn't working. And he suggested I get tested for Sjogren's. So, I'm waiting for the results. But this seems likely, especially with the light sensitivity. You're saying anxiety comes with it too? I am a mellow person but I have had issues with anxiety that feel completely related to my body/chemicals and not my mind. I am not dealing with more stress than I was able to handle in my 20s. I should be far more capable of handling things, so that's why it felt so weird to be told to take anxiety meds (which I'm not on). I'm taking CBD/delta 8 at times and other natural methods like meditation, etc. Thank you for your video. I'll be shocked if my tests come back negative for this now.

[@FallLover27]

Thank you for sharing.

[@fifin4803]

Thank you for sharing and how are you doing now ?

[@pipermonte8780]

EXCELLENT INFORMATION ❤

[@deehen9844]

I live her. He is so on about those doctors thinking that it's all in your mind.

[@jumbliejune]

I too feel I live like her,the sickness and pain in every joint,headaches and dizzy & garenteed sickness ,its the numbness in arms & hands,my GP doesn't approve of any self diagnosis,so tomorrow I will see her and ask to refer me to a neurologist, spending days in bed is awful,I can't make any arrangements for future life ,I hope myself and all will get an answer ,feeling crazy but know I'm not ,thank you for the enlightenment

[@ericaw7116]

Thank you for sharing! This is incredibly helpful for those going through similar things.

[@1malons]

Fantastic information. Thank you

[@marysmith5670]

Thank you for the. Information! I have been diagnosed with Sjogren’s. I have dry eyes and mouth. I was wondering if anyone else suffers with back pain. My pain is like bad cramps in my hips especially at night. Does anyone else diagnosed have this type pain?

[@deborahstollman6238]

I had to really advocate for my doctors to even listen to me.

[@denisewalker9132]

I was just diagnosed with Sjögren's. The main issue I had is my toung felt like it had pins and needles on it and everything had a metallic tast. I have very dry king, but thought it was from another medication I take. I have had trouble with swallowing too. I have been very tired. My primary care did lab work and one on my rhumatalogy flags came with a number of 86, when it should a -12. I'm waiting to see a rheumatologist. My eye doctor sent me to a dry eye specialist and he said yes, I definitely have Sjögren's. I'm on 3 different eyes drops and a mouth wash for the pins and needles and metallic taste. It has helped and I need to use it 4 times a day if not more. I was diagnosed as week before my 70th birthday. 😢

[@MiryamGonzalez-jw8ho]

Hil! Do you have Sjögren’s Disease? Clinical Outcomes Solutions, a healthcare research company, is conducting research into SjD through a one-time remote interview. Eligible participants will be compensated for time and effort. You may be eligible if: • Be 18 years of age or older • Have a clinical diagnosis of active systemic (i.e., extra glandular) Sjögren’s Disease for at least 6 months • Can converse in and read the English language with sufficient fluency to participate in an interview and read the documents used during the interview • Do not have another rheumatic or inflammatory disease (e.g., rheumatoid arthritis, systemic lupus erythematosus, scleroderma, inflammatory bowel disease) • Do not have another disease that causes widespread pain or fatigue symptoms (e.g., multiple sclerosis or fibromyalgia) • Able and willing to participate in a one-time, audio-recorded remote interview This research is confidential. Any contact information you provide will only be used for the purposes of compensation and interview scheduling. Please contact us at [e-mail]

[@yankeesgirl217]

Great video. It brought out some things I experience also. So the confirmation it’s not all in my head. I’ve been on plaquenil and rinvoq. Have tried steroids, Enbrel and Humira. Definitely going to give the CBD capsules a try. Thank you so much!

[@AngelaSealana]

Thank you for your video!

[@deborahstollman6238]

Getting diagnosed is so difficult.

[@Rollwithit699]

I've had symptoms dating back to 6th grade when I would get a deep burning in my ribs with any exertion, continued on and was nearly unbearable in ribs when I was pregnant. Had a very difficult childbirth that damaged my pudendal nerve which has caused burning with sitting since then. Now at 69, have years of burning low back, hip, genitals, jaws, inner lips tongue, with zaps of shooting electricity in necks, abdomen, pelvis, burning feet. All these years my doctors claimed I was faking (I read this in chart notes I saw once) and I could tell from their demeanor. Last week after finally begging to see a rheumatologist and neurologist, I was diagnosed with Sjogrens, psoriatic arthritis and small fiber neuropathy. Is there anything to stop the burning and electrical zaps? Hoping to see a pain specialist soon.

[@PreciousGda]

It's a great privilege coming across your KZbin channel Dr Odija. You have always been there for me health wise. I can vividly remember how you turned up for me when I was down with Herpes virus. Your contribution and care was highly appreciated. You are the best doctor I have ever come across. Thank you so much for the difference you make in the lives of your patients! Your kindness, sincere caring, and concern make everything better and are a great encouragement 😍..

[@sugaplumalex]

ugh i had a vaccine and the following week i had a weird swollen feeling parotid gland for two days! 5 weeks later - dry mouth. negative bloods so far but damn i def have this

[@LadyKestrel23]

Do you have problems with your nerves? Thanks

[@deborahturner3427]

I’m watching from uk! I suspect I’m suffering from this, swollen bottom lip, dry mouth, swollen glands, fatigue! I’m 46 and I’m trying to get a diagnosis but what blood tests did you ask for ? Thanks x

[@talksick508]

I’ll never have an answer I’m so sick of being dry inside and out Neck and shoulders hurt Hands lock up cold and cold feet Fatigue Insomnia Hives Skin rashes Jaw pain chewing food No diagnosis 14 years almost

[@suzzyy8669]

Hi, you are such a fresh if breathe air. Very positive. Did your rheumatologist prescribe medicine that suppress you immune system?

[@KikisStudyCorner]

I have a question: When I wake up in the morning I have a dry throat and mouth, my hands are swollen and sweaty, I’m not rested at all and my joints hurt as hell and I’m extremely stiff. Also my eyes are dry and hurt. However the dryness goes away over the day when I drink something, only the swollen hands and joint pain stays and fluctuates. I’m tired all day every day! No energy at all! I do have dental problems and had candida infection. My skin is definitely on the dry side and peels and cracks, especially in my face...I used to get sick also more often, definitely have problems with Gluten and try to avoid it, because my joint pain gets worse because of it. What do you guys think? I’m so clueless and I hate going to sleep... help

[@shoot4thstars]

I wish I could help, you’ve described a lot of my own symptoms. Especially the struggle to get stiff muscles to move in the morning. I’m not diagnosed but trying without success to get my primary Dr to test for Sjogrens

[@steveswoodworking2504]

My dry eyes is disastrously worse at night. It wakes me up several times a night they get so dry. The extreme fatigue is bad. I've got lupus and probably sjogrens.

[@rreddy4640]

@@steveswoodworking2504 I am facing similar issues. What kind of medication are you using for severe dry eyes, fatigue and other issues

[@steveswoodworking2504]

@@rreddy4640 This is all new to me as of early 2021. I am now on plaquenil 200 mg twice a day for lupus. I'm taking Cequa eye drops (like Restasis). I also use OTC Systaine Refresh eyedrops all the time. I need to use the Systaine drops at least several times per day on a good day (and if I wake up at night, I desperately need drops), and several times per hour on a bad day. Just in the last three weeks my mouth gets terribly dry. Before this I knew it was dry, extremely thick saliva, and very fast plaque buildup on my teeth (but it didn't feel dry then). Now it feels very dry, especially at night. A little research, and it seems this can lead to all kinds of cavities, lots of crowns, and dentures. I'm looking into the ACT mouth rinse with fluoride, MI paste to help keep my teeth lasting longer, as with a dry mouth it sounds like a possible disaster for the teeth. I recently started on some prednisone also, for worse lupus symptoms. I'm avoiding the sun (and am very allergic to three sunscreens I tried since I was diagnosed!). Find a good rheumatologist!

[@rreddy4640]

@@steveswoodworking2504 I am facing similar issues. Fatigue is also one more aspect I am experiencing. Thanks I will try.

[@RollinWithRosie]

So what do you think, my RO came back positive but the LA negative, do you think it's Sjogrens? ANA positive

[@mcc1483]

could you tell me what an immune-deficiency test is; what is consists of? (In have abnormally high ANA results and thyroid nodules, weird, ha?) I know something is wrong with me.

[@breeannwalker8309]

I had positive blood work then a positive lip biopsy for Sjogrens

[@jibberoverjava]

My beautiful friend died from pernicious anemia. She simply could not absorb B12 in any form.

[@Kattykat63]

What did doctor prescribe for your fatigue?

[@treecek]

DId you ever exercise with repetitive movements....such as cycle, Elliptical, etc.

[@DeviantMotives]

Doctors piss me off now. Docs blow things off

[@KishBish]

they blow off anything besides high blood pressure and diabetes 😏

[@vball2308]

Was there any connection or relationship to your thyroid nodule?

[@Up-To-Speed]

wondering the same thing. I have both. I started with thyroid nodules, then diagnosed with Grave's disease and now Sjogren's.

[@yashwinderkumar2821]

I have also sjogren syndrome dear

[@gseducation8557]

Hlo can I contact you are u from india

[@raagaviduraisamy7262]

@@gseducation8557 I'm from india too..can we form a group in fb or something so that we dont feel alone

[@bful-q7g]

I was diagnosed with Sjogren recently. Yet started losing my hair about 4 years ago. I have been on Plaquenil for 2 months ( 400mg per day) . Rheumatologist said Plaquenil should help with hair loss. Got my hopes high. Well I am losing so much hair , i am devastated. I will have to cut my hair short also. Anyone has stopped hair loss with Plaquenil ? Any Advice would be appreciated.

[@Jojorocks23]

Azerty… Make sure your ferritin iron levels are in the higher levels and as well as your B12. Get baseline of vitamin D and try and keep that around at 70. Use rosemary oil mixed with castor oil or coconut oil and put on your scalp massage gently twice a week. You can comb nettle tea through your hair and leave on. Ask pharmacist about more supplements and contraindications as to other meds ie biotin 5000, Vit D.

[@KishBish]

@@Jojorocks23 I just got labs back and I'm at 44 for vitamin D so I'm back to high dose supplementing.. my B12 was high but I'm still continuing to supplement.. I don't think my ferritin was checked, so I'll have to get that done next time.. everything else was okay besides my white blood cells were slightly low and I had high rheumatoid factor 😩 I'm really hoping increased vitamin D levels will help 🙏🏽❤️

[@KishBish]

oh! and I use rosemary and peppermint essential oils mixed in grapeseed oil for my scalp.. it's helping!

[@vampireforever6937]

Hey how Plaquenil is working for You ... is it good for this disease ? How is your experience , if you are still using it ... any benefit from this medication ?? Pls reply

[@kozzmodan5513]

@@KishBish Please make sure you're using Methylated B12 (Methylcobalamin) alongside TRUE Folate. Some people have an MTHFR mutation that prevents conversion of synthetic Folic Acid into usable Folate, which then prevents them from using B12. People who can't process Folic Acid have the synthetic vitamins accumulate in their blood, so testing may appear high when in reality they're actually deficient.

[@emmapowick]

I was diagnosed with ra in my 20s and sjogrens last year. Although as a child i had a eye condition that an optician told me was not allergies but alergy like. My opthamologist says its was probably sjogrens even then. My opthamologist prescribed imuno-suppressing eye drops which have been a huge help. I also find heated eye masks and the gel overnight eye drops (with no preservatives) have helped soothing symptoms. Also the thera tears supplements and making sure I don't wear makeup too often and I throw my makeup out and replace it regularly. The Burt's bees mascara and eye-liner is very non irritating

[@citlalie9791]

I have sjogrens too 🤗

[@MollyKateMcCarthy]

Hi Huitzilli! It’s always nice to meet another person who understands the struggle

[@fionamorel]

I was diagnosed a year ago and I still feel so lost. I don't have insurance now, so I haven't gone back to the rheumatologist who diagnosed me, but when I did see her I felt like I wasn't really given any information or advice. Just ... "Yes, you have Sjögren's. Good luck and goodbye!" Right now, the dry mouth, eyes, and skin are the most problematic for me, and I do the best I can to alleviate it. But I don't know what to do. I have three other autoimmune diseases already, and it's so overwhelming. 😔

[@kg4st]

🙏