I've been diagnosed 2019, I'm sure I had it longer than that. I ended up in the ER because I couldn't move. All my joints swelled up. I've seen 5-6 different Dr's, they ignored my systems just asked if I had dry eyes and mouth. So after suffering for years, I'm finally taking methotrexate and hydroxychloroquine. Big difference!!! I still have symptoms that haven't gone away. I hope to live pain free one day. Thanks for these videos, they are most informative.
@@sarad6278 this is why I said you need an endoscopy. The problem can be treated. My child was having a hard time till she got an endoscopy and her esophagus was in bad shape. It only takes a few minutes then you wake up and go home.Sjogrens needs attention.
I was diagnosed with sjogrens in my late 30s. I had health issues my whole life. Diagnosed with fibro, gastritis, GERD and more. I was finally diagnosed with Ehlers Danlose Syndrome at 67! I need both shoulders and my other knee replaced. I had left knee done 10 years ago.
I developed gastritis first, a year later my eyes dried out, my mouth dries out throughout the day. Down there is dry. My mother has Sjögren’s and RA and the rheumatologist I saw said I don’t have it. I’m in hell because now one of my sinuses has dried out. I’m miserable
I have been diagnosed in 2006, dry eyes, dry mouth, fatigue, and big GI problems. Used plaquenil affected my eyes. Stopped it, but the effect is staying. Also muscle ache. I use Evoxas, eye drops, Restasis, and ointment at night. Also have constipation and mutility.
My Mom had Sjogren’s. I have dry eyes and mouth but negative ANA and low IGg so my doctors are not pursuing anything further. I also have joint pain (from EDS dislocations) and muscle pain (diagnosed as fibromyalgia), skin rashes (obviously allergic in nature although I have no tested allergies), hair loss, butterfly sun rash, numbness in my toes and calves (doctor told me I must be imagining it 😢), headaches, shortness of breath (part of my non-allergy allergic reactions).
@@Fuphyter My TSH and TPO are marginally high but, again, my doctors are just avoiding that possibility. They will order tests but want to ignore the results and say that all my issues are because I am depressed (I’m very definitely not).
I would actually be interested in learning what drs can diagnose and how we know when it’s an actual diagnosis. I have codes for diagnosis at one spot I guess where it’s suspected and can’t tell if a certain dr says I have it if it’s actually counted as diagnosis or not. For example my Ophthalmologist put on my reporting have sjogrens. Does that count or is it just an option? I really think this would be helpful. My family dr told me if I have listed in notes from Dr under that them I have it but when it comes to Myasthenia Gravis my Rheumatologist and family dr and eye dr says I have it but the actual specialist says I have to have them to actually diagnose it so I don’t know. Can you help with this question?
First comment! Thanks for talking about more than just dry eye!! It’s worse than just that. However, I do have dry eye and had to get my tearducts surgically tied closed to prevent my tears from draining too fast. I also only had a pos ANA at 1:80, and a pos SSB, and a neg lip biopsy 4yrs ago, and then just recently finally had a pos SSA show up with my SSB, and was able to get diagnosed finally! I now also might have lupus developing too, cuz I had a pos ant-dsDNA too. So that’s fun! Yay! 😅
I was diagnosed with sjogrens fibromyalgia and neuropathy 20 yrs ago I had lip biopsy blood test and liptist paper in my eyes now gott RA mctd inflammatory bowel disease urinary inconvenience pituitary tumor osteoporosis eds hyper mobility huge blood cells macrosis breathing differculties slip disks 13 bulging now blood pressure drops when standing only thing keeping me going is my twins
Oh I'm so sorry to hear that you are going through all of this! I hope you feel better, find ease and comfort with your symptoms and wish you blessings to eeetore your health❤
I’d be interested in hearing more about the blood testing and learning about each one from you from your perspective of course I can look it up anywhere but I’m wanting to hear it from you
@@heatherr1141 I test positive for anti-SSa/RO, anti-phospholipid antibodies, RA and had a parotid biopsy consistent with Sjögren's. I also had a lymph node in my right breast that was also impacted with white blood cells consistent with Sjögren's.
Talking too fast is a problem for me also. You might try clicking on the settings in the video (it’s the gear icon) you can slow the speed of the video.
A lot of us with UCTD also suffer from dry eye and mouth. It’s the gift that keeps on giving, these rheumatoid diseases.
I've been diagnosed 2019, I'm sure I had it longer than that. I ended up in the ER because I couldn't move. All my joints swelled up. I've seen 5-6 different Dr's, they ignored my systems just asked if I had dry eyes and mouth. So after suffering for years, I'm finally taking methotrexate and hydroxychloroquine. Big difference!!! I still have symptoms that haven't gone away. I hope to live pain free one day. Thanks for these videos, they are most informative.
Would be interested if others have digestive issues.
Yes my grand daughter. She is 30. Get and endoscopy and you may have esophagus problems. She does.
Indeed, major digestive issues. I think it trends towards gastroparesis for me.
Yes! IBS is common with Sjögren's. Swallowing issues too.
@@sarad6278 this is why I said you need an endoscopy. The problem can be treated. My child was having a hard time till she got an endoscopy and her esophagus was in bad shape. It only takes a few minutes then you wake up and go home.Sjogrens needs attention.
Yes. Esophageal, digestion and IBS. I also have systemic scleroderma.
I've never been diagnosed with this but have sle lupus and the symptoms just need a rheumatologist.... God bless you 🙌🏼💯
I was diagnosed with sjogrens in my late 30s. I had health issues my whole life. Diagnosed with fibro, gastritis, GERD and more. I was finally diagnosed with Ehlers Danlose Syndrome at 67! I need both shoulders and my other knee replaced. I had left knee done 10 years ago.
I developed gastritis first, a year later my eyes dried out, my mouth dries out throughout the day. Down there is dry. My mother has Sjögren’s and RA and the rheumatologist I saw said I don’t have it. I’m in hell because now one of my sinuses has dried out. I’m miserable
I have been diagnosed in 2006, dry eyes, dry mouth, fatigue, and big GI problems. Used plaquenil affected my eyes. Stopped it, but the effect is staying. Also muscle ache. I use Evoxas, eye drops, Restasis, and ointment at night. Also have constipation and mutility.
My Mom had Sjogren’s. I have dry eyes and mouth but negative ANA and low IGg so my doctors are not pursuing anything further. I also have joint pain (from EDS dislocations) and muscle pain (diagnosed as fibromyalgia), skin rashes (obviously allergic in nature although I have no tested allergies), hair loss, butterfly sun rash, numbness in my toes and calves (doctor told me I must be imagining it 😢), headaches, shortness of breath (part of my non-allergy allergic reactions).
Have you had your thyroid checked? Mine was very low and I lost hair like crazy. I have EDS and fibro too.
@@Fuphyter My TSH and TPO are marginally high but, again, my doctors are just avoiding that possibility. They will order tests but want to ignore the results and say that all my issues are because I am depressed (I’m very definitely not).
@@mischelepentz3613 some drs suck
Perfect. Thanks
I would actually be interested in learning what drs can diagnose and how we know when it’s an actual diagnosis. I have codes for diagnosis at one spot I guess where it’s suspected and can’t tell if a certain dr says I have it if it’s actually counted as diagnosis or not. For example my Ophthalmologist put on my reporting have sjogrens. Does that count or is it just an option? I really think this would be helpful. My family dr told me if I have listed in notes from Dr under that them I have it but when it comes to Myasthenia Gravis my Rheumatologist and family dr and eye dr says I have it but the actual specialist says I have to have them to actually diagnose it so I don’t know. Can you help with this question?
First comment! Thanks for talking about more than just dry eye!! It’s worse than just that. However, I do have dry eye and had to get my tearducts surgically tied closed to prevent my tears from draining too fast.
I also only had a pos ANA at 1:80, and a pos SSB, and a neg lip biopsy 4yrs ago, and then just recently finally had a pos SSA show up with my SSB, and was able to get diagnosed finally! I now also might have lupus developing too, cuz I had a pos ant-dsDNA too. So that’s fun! Yay! 😅
I was diagnosed with sjogrens fibromyalgia and neuropathy 20 yrs ago I had lip biopsy blood test and liptist paper in my eyes now gott RA mctd inflammatory bowel disease urinary inconvenience pituitary tumor osteoporosis eds hyper mobility huge blood cells macrosis breathing differculties slip disks 13 bulging now blood pressure drops when standing only thing keeping me going is my twins
Plus my histamine is attacking me lost all my teeth on chemo med lost my hair to fatigue 😢
Oh I'm so sorry to hear that you are going through all of this!
I hope you feel better, find ease and comfort with your symptoms and wish you blessings to eeetore your health❤
Can Sjogren's be confused with Cytokine release Syndrome ?
I’d be interested in hearing more about the blood testing and learning about each one from you from your perspective of course I can look it up anywhere but I’m wanting to hear it from you
@@heatherr1141 I test positive for anti-SSa/RO, anti-phospholipid antibodies, RA and had a parotid biopsy consistent with Sjögren's. I also had a lymph node in my right breast that was also impacted with white blood cells consistent with Sjögren's.
Great information, but please speak more slowly so I can digest what you are saying.
Talking too fast is a problem for me also. You might try clicking on the settings in the video (it’s the gear icon) you can slow the speed of the video.
@gratefulot360 close caption is helpful for me too.