Thanks for watching! I'd love to hear your thoughts on the health issues regarding Sjogren's Disease discussed in the video. Have you or someone you know experienced any of these conditions? How have you managed them, and what has worked (or not worked) in your experience? Your insights and stories could really help others going through something similar. Let’s start a conversation - feel free to share your thoughts, and experiences, or ask any questions you may have!
My first presentation was peripheral neuropathy. That was followed by extreme cold sensitivity, tinnitus, dry eye and dry mouth. Now my rheumatologist knows it is Sjogren’s but it took me four years to get that diagnosis. This doctor is very knowledgeable about Sjogren’s.
I have Sjögren’s and I am so sick all of the time. Feel absolutely horrible and fatigued. Also fibro and a host of other co-mingling ailments. Love your videos! Great energy and very specific with the systems. Would love a video about Sjogrens labs and meds.
My neuro-sjögrens has lessened since getting hydoxocobalamin ( b12 - DO NOT use cyanocobalmin . It is a cyanide form of b12 ) And thiamine and B6 Injections 3x a week. My neuropathy, brain fog, balance, chronic pain and everything mentioned in video has lessened or even gone away. That has helped calmed down my allergies and helps heal my retina and macula Hope this information helps someone. It's taken over a year to really improve my brain fog and memory but only a month to bring back my balance and start lessening the neuropathy
I was diagnosed with Sjogrens in 2008 at Mayo Clinic and have been to seven different Rheumatologist. Not one of them have ever discussed or told me about anything other than dry eyes and dry mouth. I have since been diagnosed with more autoimmune diseases and still get very vague explanations. It is frustrating. Thank you and is there any chance you could come practice in My area. We need Rheumatologist doctors here.
It’s frustrating isn’t it? We can simply educate ourselves on UA-cam but they keep searching for answers with scans, etc but not go back to the Sjogrens itself and our reactive immune system as the root problem. My local Dr knows more about the condition past the dryness than the specialists I’ve seen. Don’t get me started on dental professionals, ugh.
The problem, other than lack of knowledge and lack of coordination among the specialists, is that even with he diagnosis not much can be done. That’s the issue I find the most frustrating. After all the hoops, loops, tests, consultations and a diagnosis arrives, you think great I’ll finally feel better. Only you don’t. Yes, you take the meds and supplements but the illness progresses and you find yourself in a never ending cycle of chronic illness where you treat your symptoms with a hit and miss approach.
Whoa....this answers some questions for me. People ask me what is wrong with me? Well...I have...FM, Sjogren, Lupus. then the list of how these things affect me? I can see most of it is Sjogren's.
Uhhghh.. I have so many issues with Sjögren's. I feel like I am losing the battle. Have had two really bad falls in last 8 weeks. Still have severe bruising from the falls. I don't even want to know the internal damage. And who has energy to run to 10 different appointments for tests and tests and more tests? I can barely get a bath without a nap after.. My eyes, my kidneys, my digestive system, salivary glands, neuropathy, dizziness, brain zaps, horrible unrestorative sleep, nocturnal seizures, migraines, list goes on and on. I am not going to win the Sjögren's battle. Better, in my case to ask, 'what part of your body hasn't been affected by Sjögren's?' I honestly can't think of one. 🙏🙏🙏
I feel very much like you, so many life changing issues and develope quickly, doctors either not knowledgeable or must limit appointment time to hurry you through, always searching for info on UA-cam. I'm 72!!
@@dianebeier8379 I will be 63 in April. At the moment, Fatigue and sleepiness are my foes and I just learned Statins cause Fatigue in women. Going off my Statin to see if I can wake up and live! I can't seem to get deep sleep for restoration. Got to keep trying and fighting. 🙏
I am newly diagnosed with Sjogrens, i also am diabetic, severe inflammation, sensory and perifial neuropathy. I broke out in hives with the medication so they took me off it
Great video, well explained though I had to speed up. Yes to all you mentioned! Think I’ll share with my Neuroligist and Rheumatologist though not sure they’ll appreciate my doing my own research. I don’t think they’re joining the dots or perhaps aren’t so informed. I’m being sent for scan after scan perhaps to rule out other but all I’m experiencing with my diagnosed Sjogrens is described here. My question is… can any of these MRIs, CTs as in brain, spine, etc show the Sjogrens. My spine MRI did show up neck issues but that’s all, nerve conduction was very revealing but I’m not sure neurologist is linking it to the Sjogrens. Immunosuppressants now mentioned, what’s your thoughts on taking those?
I have Sjogren's and many of these symptoms but the only treatment I'm offered is medication for dry eyes and mouth. Doctors here (UK) have no clue that there is so much more and worse, they have no interest. Meanwhile the symptoms accumulate. This is so depressing.
Read sorh e fatiha or intake water of sorh e fatiha Allah gave u shifa I.A search write sorh e fatiha and sorh e Rehman voice of qari Abdul basit voice
And when I started having incontinence problems they told me that I had Cauda Equina and gave me a spinal fusion... I still have the same issues plus all the dryness and I can hardly feel my feet or walk 2000 steps and still I'm told it's my RA... I also had Encephalitis 40 years ago, diagnosed with a lumbar puncture... I'm thinking that was the start, I've had fibromyalgia symptoms since. I was diagnosed with RA 16 years ago but Biologics have always made me ill. Lately the electric shocks are unbelievable but nobody listens 😢 My teeth are also crumbling. I just feel like a bag of aching tired bones
I have Sjögren’s but a lot of my symptoms are better due to a functional medicine practitioner. The things you have mentioned here - are they mainly caused by inflammation? I’m just wondering as for a lot of them you mention steroids helping. Thank you 🙏🏻
I'm positive I have Sjogrens. I've had several positive ANA & the patterning (?) says it looks like lupus with Sjogrens. I can't get any Dr to take me seriously!! I just had the antibody test done for Sjogrens and it's near negative. Dr (Nusre Practioner), said it's negative you don't have it!!! 😢 I need help!! This isn't life living like this!!
It starts with lab works to see if you have the antibodies. The “official” test is a biopsy (or several) from the mouth. I say several because it can be quite hard to nail the right spot for a positive result. But as my doctor said, even if you do the biopsy for an official diagnosis, it doesn’t change the treatment plan you may have in place, as there is no cure.
Aside from my Sjogrens dx in 08 I was dx with RA on 2010. I still have no deterioration in my joints but still testing positive. How can this be after all these years and take no medication. I don’t believe I have it. My Rheumatologist said it’s coming.
Morton’s Neuroma , Meneires Disease as well Parotid gland pain each time you eat - Shock like (seizure like zaps ) from deep inside the ear down entire side of body
You need to see a physician who is board certified in rheumatology in your area. You can also read about what treatments others have received, but please remember everyone is different and that is why a physician is important in the mix. Good Luck
Thanks for watching! I'd love to hear your thoughts on the health issues regarding Sjogren's Disease discussed in the video.
Have you or someone you know experienced any of these conditions? How have you managed them, and what has worked (or not worked) in your experience?
Your insights and stories could really help others going through something similar. Let’s start a conversation - feel free to share your thoughts, and experiences, or ask any questions you may have!
Please tell me what kind of doctors diagnosis this dissease. What kinds of specialist please tell me . We want go this doctors
Please more Sjögren video’s!!!! We’re so lost in this disease.
My first presentation was peripheral neuropathy. That was followed by extreme cold sensitivity, tinnitus, dry eye and dry mouth. Now my rheumatologist knows it is Sjogren’s but it took me four years to get that diagnosis. This doctor is very knowledgeable about Sjogren’s.
Please tell me the doctors name
I have Sjögren’s and I am so sick all of the time. Feel absolutely horrible and fatigued. Also fibro and a host of other co-mingling ailments. Love your videos! Great energy and very specific with the systems. Would love a video about Sjogrens labs and meds.
My neuro-sjögrens has lessened since getting hydoxocobalamin ( b12 - DO NOT use cyanocobalmin . It is a cyanide form of b12 )
And thiamine and B6 Injections 3x a week. My neuropathy, brain fog, balance, chronic pain and everything mentioned in video has lessened or even gone away. That has helped calmed down my allergies and helps heal my retina and macula
Hope this information helps someone. It's taken over a year to really improve my brain fog and memory but only a month to bring back my balance and start lessening the neuropathy
I have all those symptoms but no one will treat them I am so miserable.
Me too, feel like I'm on my own😢😢😢😢
I had no idea about any of this, but now my symptoms make so much more sense. Dr Yu, got any openings?😊
I was diagnosed with Sjogrens in 2008 at Mayo Clinic and have been to seven different Rheumatologist. Not one of them have ever discussed or told me about anything other than dry eyes and dry mouth. I have since been diagnosed with more autoimmune diseases and still get very vague explanations. It is frustrating. Thank you and is there any chance you could come practice in My area. We need Rheumatologist doctors here.
It’s frustrating isn’t it? We can simply educate ourselves on UA-cam but they keep searching for answers with scans, etc but not go back to the Sjogrens itself and our reactive immune system as the root problem. My local Dr knows more about the condition past the dryness than the specialists I’ve seen. Don’t get me started on dental professionals, ugh.
The problem, other than lack of knowledge and lack of coordination among the specialists, is that even with he diagnosis not much can be done. That’s the issue I find the most frustrating. After all the hoops, loops, tests, consultations and a diagnosis arrives, you think great I’ll finally feel better. Only you don’t. Yes, you take the meds and supplements but the illness progresses and you find yourself in a never ending cycle of chronic illness where you treat your symptoms with a hit and miss approach.
Thank you good info,... Keep helping us! I've been diagnosed with shogrens now for 8 years,.. no help but this info. 😮😢❤❤❤
You got this!
Me also😢😢😢😢
I have learned much from this video and I appreciate it immensely
thank you so much!
I have rheumathoid arthritis pver 4 decades, Sjogrens came along about 10 yrs ago
How are you doing?
Whoa....this answers some questions for me. People ask me what is wrong with me? Well...I have...FM, Sjogren, Lupus. then the list of how these things affect me? I can see most of it is Sjogren's.
Thank you, I needed to hear this information.❤
Doc wondering on info/ research / your view/ experience regarding dental health/root canals and autoimmune diseases ??? 💙 Thanks
Thank you, appreciate the information.
Glad it was helpful!
Uhhghh..
I have so many issues with Sjögren's. I feel like I am losing the battle. Have had two really bad falls in last 8 weeks. Still have severe bruising from the falls. I don't even want to know the internal damage. And who has energy to run to 10 different appointments for tests and tests and more tests? I can barely get a bath without a nap after..
My eyes, my kidneys, my digestive system, salivary glands, neuropathy, dizziness, brain zaps, horrible unrestorative sleep, nocturnal seizures, migraines, list goes on and on.
I am not going to win the Sjögren's battle.
Better, in my case to ask, 'what part of your body hasn't been affected by Sjögren's?' I honestly can't think of one.
🙏🙏🙏
It is overwhelming. 😢
I feel very much like you, so many life changing issues and develope quickly, doctors either not knowledgeable or must limit appointment time to hurry you through, always searching for info on UA-cam. I'm 72!!
@@shellyodian1803 Diane…I have got ALL my info from YT.
I get my first meeting with your rheumatologist on Tuesday and it’s only a Zoom call
@@dianebeier8379 I will be 63 in April. At the moment, Fatigue and sleepiness are my foes and I just learned Statins cause Fatigue in women. Going off my Statin to see if I can wake up and live! I can't seem to get deep sleep for restoration. Got to keep trying and fighting. 🙏
I am newly diagnosed with Sjogrens, i also am diabetic, severe inflammation, sensory and perifial neuropathy. I broke out in hives with the medication so they took me off it
Great video, well explained though I had to speed up. Yes to all you mentioned! Think I’ll share with my Neuroligist and Rheumatologist though not sure they’ll appreciate my doing my own research. I don’t think they’re joining the dots or perhaps aren’t so informed. I’m being sent for scan after scan perhaps to rule out other but all I’m experiencing with my diagnosed Sjogrens is described here. My question is… can any of these MRIs, CTs as in brain, spine, etc show the Sjogrens. My spine MRI did show up neck issues but that’s all, nerve conduction was very revealing but I’m not sure neurologist is linking it to the Sjogrens. Immunosuppressants now mentioned, what’s your thoughts on taking those?
I have Sjogren's and many of these symptoms but the only treatment I'm offered is medication for dry eyes and mouth. Doctors here (UK) have no clue that there is so much more and worse, they have no interest. Meanwhile the symptoms accumulate. This is so depressing.
Same here...very distressing, difficult to get through each day😢😢😢😢
Read sorh e fatiha or intake water of sorh e fatiha Allah gave u shifa I.A search write sorh e fatiha and sorh e Rehman voice of qari Abdul basit voice
thank you Dr excellent information.🙂
What treatment is there that is not by individual symptoms.
And when I started having incontinence problems they told me that I had Cauda Equina and gave me a spinal fusion... I still have the same issues plus all the dryness and I can hardly feel my feet or walk 2000 steps and still I'm told it's my RA... I also had Encephalitis 40 years ago, diagnosed with a lumbar puncture... I'm thinking that was the start, I've had fibromyalgia symptoms since. I was diagnosed with RA 16 years ago but Biologics have always made me ill. Lately the electric shocks are unbelievable but nobody listens 😢
My teeth are also crumbling. I just feel like a bag of aching tired bones
Me too, I'm 72, more symptoms every year😢😢😢😢😢😢
Thank you
How do you determine whether neuropathy is from Sjogrens or chemotherapy. 10:26
My question as well, all the best!
I have Sjögren’s but a lot of my symptoms are better due to a functional medicine practitioner. The things you have mentioned here - are they mainly caused by inflammation? I’m just wondering as for a lot of them you mention steroids helping. Thank you 🙏🏻
I'm positive I have Sjogrens. I've had several positive ANA & the patterning (?) says it looks like lupus with Sjogrens. I can't get any Dr to take me seriously!! I just had the antibody test done for Sjogrens and it's near negative. Dr (Nusre Practioner), said it's negative you don't have it!!! 😢 I need help!! This isn't life living like this!!
He can barely hold his excitement and smiley face while talking about it
How d you get diagnosed what tests
It starts with lab works to see if you have the antibodies.
The “official” test is a biopsy (or several) from the mouth.
I say several because it can be quite hard to nail the right spot for a positive result.
But as my doctor said, even if you do the biopsy for an official diagnosis, it doesn’t change the treatment plan you may have in place, as there is no cure.
Aside from my Sjogrens dx in 08 I was dx with RA on 2010. I still have no deterioration in my joints but still testing positive. How can this be after all these years and take no medication. I don’t believe I have it. My Rheumatologist said it’s coming.
HELP!!! What therapies
Morton’s Neuroma , Meneires Disease as well Parotid gland pain each time you eat - Shock like (seizure like zaps ) from deep inside the ear down entire side of body
I have Sjogrens...maybe my "idiopathic tachycardia" isn't so idiopathic, after all.
I have autonomic neuropathy due to Sjorgren. This causes tachycardia with slight activity.😢
I have sjogrens how to control?
You need to see a physician who is board certified in rheumatology in your area. You can also read about what treatments others have received, but please remember everyone is different and that is why a physician is important in the mix. Good Luck
Yes, what can we do most dr’s don’t know!
Who’s is most prone primary or secondary Sjogren’s
We are advised to blanch broccoli and all cruciferous vegetables before eating because they can affect thyroid function. Please advise.
Thank you❤❤
Thanks
I hv myeloradiculo neuropathy nd Sjogren
Why do you describe these symptoms as if they were comical?
A bit weird
I also noticed that. 🤨
The symptoms are so severe that he tries not to bring on the “Fox” news kind of anxiety? Just a thought
hank you
Most doctors won’t believe you anyway …
You have to drink water constantly if you don’t to loose a kidney and makes you look older
Can't watch...he seems way too happy/giddy describing the painful suffering of people who have this autoimmune condition