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 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
Thank you so much for sharing. I have so much neurological symptoms but I didn't find neurologist that listen and knows about Sjorgen. Hope I Will find one soon. Thanks for sharing and I'll try these recomandations for vitamins! ❤
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 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 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 TH-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.
@@DJ-nk4dqso true! No one listens past our first couple of sentences! So frustrating, I just don’t want to go to any doctor anymore! I was diagnosed with Sjogrens over twenty five years ago, the only thing I’ve been told is dry eyes and mouth and they don’t associate my other symptoms to this disease. Wish someone really cared!
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?
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.
A big problem is that we get diagnosed with several of these things together and that they have so many overlapping symptoms. It's difficult to tell which illness is causing what symptoms. Also, the available treatments are seriously lacking and subpar for many of us. 😢
@mermaid_at_heart213 So true. Though most of my doctors did help me to create a blueprint of sorts that made it possible for me to continue to care for my children. Attend College in hope that I could follow some career path. One almost erased me. Two were sort of quacks. Obtaining pain medication has been a foolish nightmare at times. Interrupting work. Right now, I can manage with what I take. I have a good team of doctors that have supported me and finally finishing College. In time to be concerned now laws are changing and my returning to work I imagine is going to be limited. I am good at what I can do but I rely on my doctors as my body continues to breakdown. I at least have concluded my body does not create endorphins as it should. Tramadol helps as long as I regulate how much I do. And Nabumetome. Zyrtec daily. Vitamins. Now heart meds which has a nice side effect. I am less hungry. Good. I hate taking meds but I hate being a human vegetable more. Though I think I can finally get a pneumonia booster? That helped me a lot dealing with constant flu. Year before last kept getting what I imagine was a cold. Eventually having to leave my job because I kept getting sick but no fever. My immune system bites. Though, as doctor pointed out and this could be good news. Unlike grandma, I didn't develop Osteoporosis or Rheumatoid Arthritis. I did start developing Osteoarthritis prematurely in my teens. Though this could be deceiving. The pain develops usually in my joints but often it is my ligaments that are increasing my pain around my joints. Causing either tendonitis or bursitis. I did eat a better diet than dad and grandma. Dad did not develop all of the problems grandma and I did. I focused a lot on helping my children develop strong bones, a balanced diet. Though not really blueberries but strawberries, apples, oranges, pineapple and bannanas. Out of three no early arthritis, tendon or bursitis. They all developed allergies. Two youngest problems with asthma. Though I believe it was my ignorance. Being too exposed to second hand smoke from dad during my last trimester. I wasn't around him much when carrying my daughter. We all suffered a lot of different childhood illnesses. Yet many young people are still developing most of these symptoms so I am leaning more toward a bad gene. My last stage triggered by a bad case of the flu. Though we must have a bad gene in there. Since it does not become disabling in all family members not all family members. This I think is good news. That through genetics we at least can lessen the risk of transmission. That I developed problems around the same age dad did does support my theory my pituitary glands have something to do with it. No allergies, vision problems, increased stiffness from running, aggravated pain in cold weather that had to be treated with topical medications. Until the onset of puberty. I read we experience another bio change around thirty. Which is when Dad and I developed reacurring pain and stiffness so bad it limited our mobility and fine motor skills. I hope all of you were able to get help managing. Though my income is limited, other programs have made my life manageable enough. Hopefully mgrs. won't raise rent this year too much. High rents now mean I must rely on other programs for utilities, food and transportation. I am hoping for at least part-time work this year. I haven't had any success working around very young children and this greatly limits where I can work. Thankfully, my state has helped me a lot to finish my degree. I really wanted to teach in one classroom the entire year. This gives me a better chance to work all year with a limited chance of illness. Easier said than done. I like helping charities but this requires at least some outside work and I like the work. Not a great homebody.
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 TH-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. 🙏
Wow!!! I was told years ago I had this. Nobody ever checked into it..I was told later I had ms only to not ms in my labs and scans. My lumbar puncture showed no ms. But still it's a yes and no
I've given up. I'm so sick of the " golden standard" bullshit. Ev1 is treated like they only have dry eyes, mouth and RA.positive RA titers will show up, but I have no RA. I've been to 4 rheumatologist. Same old same old. My internist just wants me to exercise! I feel like everything is broken. I could use 6 docs for what I have. Docs don't care. I live alone and it's so hard to get everything done. Since it takes years to diagnose, I think it'll be a decade before the medical community to find a treatment. I'll be dead before this happens, and I'm only middle aged. Shame on all you docs who would rather have a " conveyor belt" practice, than sit and listen to us. It would be best just to get the lymphoma and die, then to live with this.
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!!
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
It’s already affecting all this on me!! N my flares r truly horrible now. It’s destroyed my digestive system which in turn have hurt my liver n kidneys!! When I flare up now?? It’s 3/ 4 months can’t get out of bed I’m exhausted! My stomach is so so swollen! My nerves thru my feet n legs?? Horrible! I get up n my ankles have numb tinkling n pins!! Some parts of my skin are freezing n others hot! It’s the strangest feeling!! I have secondary with RA!! It’s gotten so bad. I’m coming out of my 2nd 3 month flare up (I hope) I’m exhausted from being exhausted (if anyone understands this) drs are the ones who have done part of this to me. So I refuse to see a dr!! Steroids? Immunosuppressant drugs??? Absolutely horrible!! All $$$ making u need to do better! Your side effects are ridiculous! I’ve had foot drop! The strangest thing ever!! Notice he’s not telling us anything we can do to hold onto muscles?? Omg no no one is poking n puncturing me I’m not a guinea pig 🐹! Everything he says is drugs drugs drugs!! Mine is very serious! N I would rather move to a DIE WITH DIGNITY STATE N BE DONE WITH IT! I’d rather donate what I can to someone with a family who loves them n cares then sit here getting ill n scared!! It’s a horrible feeling to be petrified to eat!! I eat all organic and raw as it is but since this last flareup, it was all digestive and I can’t do anymore. I don’t wanna eat anything right now. I’m on an all liquid diet and I am so deathly afraid to eat anything solid. I don’t need any meat as it is and I take vitamins to make up for the vitamins. I’m missing meat, but still after this last flareup it was so so bad even on the strict organic diet I’m on And I do no sugars no refined no processed foods and still had a flareup. People don’t realize how horrible this auto immune can actually get.
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
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 🙏🏻
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.
Ive had menegitis several times, i have sev ra and ss, vasculitis..im on methotrexate and arava ive been discharged frim ED everytime, by myself, and had brain seizures and lost my vision for two days (snow blindness)..we cant give you a new body is what i was told,im 50.
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
I didn't take it this way, perhaps because I've had so many bad experiences with doctors who are dismissive regarding my symptoms that I saw this doctor as validating the symptoms I report and recognizes that they are serious. I've been through the "cracked pot" treatment for too long so this doctor gave me insights that no other doctor has. He's obliquely addressing his peers as well as us patients. If I were in his position I'd be pretty embarrassed and frustrated with my peers at this point.
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 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
Thank you! I'm going to look into it. I'm already taking b-12 prescribed to me.
Thank you so much for sharing. I have so much neurological symptoms but I didn't find neurologist that listen and knows about Sjorgen. Hope I Will find one soon. Thanks for sharing and I'll try these recomandations for vitamins! ❤
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.
Same. It seems impossible to get any kind of improvement that isn't just minimal and superficial.
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 all those symptoms but no one will treat them I am so miserable.
Me too, feel like I'm on my own😢😢😢😢
Get a good rheumatologist to do a skin test.
I hear ya ❤
I have learned much from this video and I appreciate it immensely
thank you so much!
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 TH-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.
@@DJ-nk4dqso true! No one listens past our first couple of sentences! So frustrating, I just don’t want to go to any doctor anymore! I was diagnosed with Sjogrens over twenty five years ago, the only thing I’ve been told is dry eyes and mouth and they don’t associate my other symptoms to this disease. Wish someone really cared!
I had no idea about any of this, but now my symptoms make so much more sense. Dr Yu, got any openings?😊
I have rheumathoid arthritis pver 4 decades, Sjogrens came along about 10 yrs ago
How are you doing?
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 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?
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.
A big problem is that we get diagnosed with several of these things together and that they have so many overlapping symptoms. It's difficult to tell which illness is causing what symptoms. Also, the available treatments are seriously lacking and subpar for many of us. 😢
@mermaid_at_heart213 So true. Though most of my doctors did help me to create a blueprint of sorts that made it possible for me to continue to care for my children. Attend College in hope that I could follow some career path.
One almost erased me. Two were sort of quacks. Obtaining pain medication has been a foolish nightmare at times. Interrupting work.
Right now, I can manage with what I take. I have a good team of doctors that have supported me and finally finishing College.
In time to be concerned now laws are changing and my returning to work I imagine is going to be limited. I am good at what I can do but I rely on my doctors as my body continues to breakdown.
I at least have concluded my body does not create endorphins as it should. Tramadol helps as long as I regulate how much I do. And Nabumetome. Zyrtec daily. Vitamins. Now heart meds which has a nice side effect. I am less hungry. Good. I hate taking meds but I hate being a human vegetable more.
Though I think I can finally get a pneumonia booster? That helped me a lot dealing with constant flu. Year before last kept getting what I imagine was a cold. Eventually having to leave my job because I kept getting sick but no fever. My immune system bites.
Though, as doctor pointed out and this could be good news. Unlike grandma, I didn't develop Osteoporosis or Rheumatoid Arthritis. I did start developing Osteoarthritis prematurely in my teens. Though this could be deceiving. The pain develops usually in my joints but often it is my ligaments that are increasing my pain around my joints. Causing either tendonitis or bursitis.
I did eat a better diet than dad and grandma. Dad did not develop all of the problems grandma and I did. I focused a lot on helping my children develop strong bones, a balanced diet. Though not really blueberries but strawberries, apples, oranges, pineapple and bannanas. Out of three no early arthritis, tendon or bursitis. They all developed allergies. Two youngest problems with asthma. Though I believe it was my ignorance. Being too exposed to second hand smoke from dad during my last trimester. I wasn't around him much when carrying my daughter.
We all suffered a lot of different childhood illnesses. Yet many young people are still developing most of these symptoms so I am leaning more toward a bad gene. My last stage triggered by a bad case of the flu. Though we must have a bad gene in there. Since it does not become disabling in all family members not all family members.
This I think is good news. That through genetics we at least can lessen the risk of transmission. That I developed problems around the same age dad did does support my theory my pituitary glands have something to do with it. No allergies, vision problems, increased stiffness from running, aggravated pain in cold weather that had to be treated with topical medications. Until the onset of puberty.
I read we experience another bio change around thirty. Which is when Dad and I developed reacurring pain and stiffness so bad it limited our mobility and fine motor skills.
I hope all of you were able to get help managing. Though my income is limited, other programs have made my life manageable enough. Hopefully mgrs. won't raise rent this year too much. High rents now mean I must rely on other programs for utilities, food and transportation.
I am hoping for at least part-time work this year. I haven't had any success working around very young children and this greatly limits where I can work. Thankfully, my state has helped me a lot to finish my degree. I really wanted to teach in one classroom the entire year. This gives me a better chance to work all year with a limited chance of illness.
Easier said than done. I like helping charities but this requires at least some outside work and I like the work. Not a great homebody.
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 TH-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. 🙏
Thank you, appreciate the information.
Glad it was helpful!
Doc wondering on info/ research / your view/ experience regarding dental health/root canals and autoimmune diseases ??? 💙 Thanks
Wow!!! I was told years ago I had this. Nobody ever checked into it..I was told later I had ms only to not ms in my labs and scans. My lumbar puncture showed no ms. But still it's a yes and no
thank you Dr excellent information.🙂
Thank you, I needed to hear this information.❤
Thanks for sharing your knowledge! Wish my docs would really listen!
Happy to help!
Can you talk more about using ultra sound of parotid?
He can barely hold his excitement and smiley face while talking about it
I've given up. I'm so sick of the " golden standard" bullshit. Ev1 is treated like they only have dry eyes, mouth and RA.positive RA titers will show up, but I have no RA. I've been to 4 rheumatologist. Same old same old. My internist just wants me to exercise! I feel like everything is broken. I could use 6 docs for what I have. Docs don't care. I live alone and it's so hard to get everything done. Since it takes years to diagnose, I think it'll be a decade before the medical community to find a treatment. I'll be dead before this happens, and I'm only middle aged. Shame on all you docs who would rather have a " conveyor belt" practice, than sit and listen to us. It would be best just to get the lymphoma and die, then to live with this.
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!!
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
How do we treat the autonomic symptoms?
Thank you
It’s already affecting all this on me!! N my flares r truly horrible now. It’s destroyed my digestive system which in turn have hurt my liver n kidneys!! When I flare up now?? It’s 3/ 4 months can’t get out of bed I’m exhausted! My stomach is so so swollen! My nerves thru my feet n legs?? Horrible! I get up n my ankles have numb tinkling n pins!! Some parts of my skin are freezing n others hot! It’s the strangest feeling!! I have secondary with RA!! It’s gotten so bad. I’m coming out of my 2nd 3 month flare up (I hope) I’m exhausted from being exhausted (if anyone understands this) drs are the ones who have done part of this to me. So I refuse to see a dr!! Steroids? Immunosuppressant drugs??? Absolutely horrible!! All $$$ making u need to do better! Your side effects are ridiculous!
I’ve had foot drop! The strangest thing ever!! Notice he’s not telling us anything we can do to hold onto muscles??
Omg no no one is poking n puncturing me I’m not a guinea pig 🐹! Everything he says is drugs drugs drugs!!
Mine is very serious! N I would rather move to a DIE WITH DIGNITY STATE N BE DONE WITH IT! I’d rather donate what I can to someone with a family who loves them n cares then sit here getting ill n scared!!
It’s a horrible feeling to be petrified to eat!! I eat all organic and raw as it is but since this last flareup, it was all digestive and I can’t do anymore. I don’t wanna eat anything right now. I’m on an all liquid diet and I am so deathly afraid to eat anything solid. I don’t need any meat as it is and I take vitamins to make up for the vitamins. I’m missing meat, but still after this last flareup it was so so bad even on the strict organic diet I’m on And I do no sugars no refined no processed foods and still had a flareup. People don’t realize how horrible this auto immune can actually get.
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
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😢😢😢😢😢😢
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 🙏🏻
How do you determine whether neuropathy is from Sjogrens or chemotherapy. 10:26
My question as well, all the best!
What treatment is there that is not by individual symptoms.
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.
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.😢
HELP!!! What therapies
Ive had menegitis several times, i have sev ra and ss, vasculitis..im on methotrexate and arava ive been discharged frim ED everytime, by myself, and had brain seizures and lost my vision for two days (snow blindness)..we cant give you a new body is what i was told,im 50.
I'm so sorry for what you are going through. I will continue to pray for you.
how can I treat this
I hv myeloradiculo neuropathy nd Sjogren
Thanks
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
Sjögren's disease also causes
Sjögren's vasculitis.
We are advised to blanch broccoli and all cruciferous vegetables before eating because they can affect thyroid function. Please advise.
Thank you❤❤
Most doctors won’t believe you anyway …
hank you
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
You must be watching something different to me. I’m relieved to hear a Dr go into such depth.
Molim prijevod na hrvatski jezik. Hvala
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
I didn't take it this way, perhaps because I've had so many bad experiences with doctors who are dismissive regarding my symptoms that I saw this doctor as validating the symptoms I report and recognizes that they are serious. I've been through the "cracked pot" treatment for too long so this doctor gave me insights that no other doctor has. He's obliquely addressing his peers as well as us patients. If I were in his position I'd be pretty embarrassed and frustrated with my peers at this point.