I'm a transplant infection specialist and my wife was just diagnosed with sjogren's. Wanted to thank you for the videos and podcast, they have been both encouraging and informative at a very scary time for us. Your story and symptoms are very reflective of my wife's. We have been together since high school and have both just always chalked up her stomach issues, fatigue, and muscles pains to stress. The funny thing about it is I was diagnosed with celiac disease 3 years ago and we both went gluten free, she had a marked improvement in all her symptoms - despite negative celiac testing. We just assumed she had a non-celiac gluten sensitivity but now with the sjogren's diagnosis it all makes so much sense. She did not start experiencing the dry mouth and eye until a few months ago. This experience has certainly changed the paradigm in which I think about the disease phenotype - it is so much more than just "dry mouth, dry eye."
I can understand how scary the diagnosis is to hear. When I first got my diagnosis, I was a wreck. My doctor saw tears rolling down my face and reassured me that this disease can be managed and the percentage of people with serious symptoms are smaller, so I didn't go into panic mode. For a while, every little thing I felt, I chalked it up to my disease. Now I concentrate on helping myself live a better life in spite of the diagnosis. I try to get as much info. as possible to eat better, exercise and take vitamins to help my condition. I don't know what the future holds, but I won't be defined by this disease. I have always been very active, and hope and pray I can remain that way. Attitude plays a big part in managing any disease and I will try to remain positive. The best of luck to your wife and her journey with this disease.
Thank you for sharing your experience. It has been a difficult time for me, I was diagnosed with Sjögren’s a year or so ago. I felt alone, and still do.
Thank you for this podcast. I have Sjgrones and I feel like I don't get told anything, so I'm trying to figure out why I feel like I do. Again thanks..
Thank you. I first saw you in a video about arthritis. You were great. I was diagnosed with Sjogrens in March after heavy thrush, a loss of taste, and a five-week flu. Then my mouth got worse. Five weeks later, I had lost 53 pounds, which was 1/3 of my total body weight. I'm now on Pilocarpine; I've been on hydroxychloroquine for lupus for the last 41 years. I wish to become immuno confident. I also want to join the Sjogren's community. Since your Sjogrens Summit was virtual, can I access the workshops you presented? I definitely want to view the brain fog workshop. You and this video have been extremely helpful. Again, thank you.
Thank you for the video. I have had symptoms for years and want to bring up the possibility of Sjogren’s with my PCP next month. I’ve been afraid of looking like a hypochondriac. But I also have EoE and Hashimoto’s. So it’s not a stretch that I could have Sjogren’s as well. Again, thanks. I look forward to learning more from your channel.
@@stephaniecarl9938 that is my driving force- I feel so privileged that my labs were glaringly obvious. I can’t help but wonder how long I would have waited if that weren’t the case. 😭
Thank you for sharing and helping share your expertise. On Wednesday I’m going to see a rehmatologist for the first time to find out about sojourn. I’m so scared he is going to blow me off. I’m 66 now and in the process of having all my caps removed to put new caps on. Dentist for years have been telling me my dental problems are due to my dry mouth and drink more water. It is costing $30,000 that I can’t really afford. All the eye doctors I’ve seen have told me I have dry eyes and use eye drops. It is only recently the opthamalogist mentioned sojourn a condition I have never heard of. I will do whatever a expert Can tell me to. Namaste Leslie
I'm a transplant infection specialist and my wife was just diagnosed with sjogren's. Wanted to thank you for the videos and podcast, they have been both encouraging and informative at a very scary time for us. Your story and symptoms are very reflective of my wife's. We have been together since high school and have both just always chalked up her stomach issues, fatigue, and muscles pains to stress. The funny thing about it is I was diagnosed with celiac disease 3 years ago and we both went gluten free, she had a marked improvement in all her symptoms - despite negative celiac testing. We just assumed she had a non-celiac gluten sensitivity but now with the sjogren's diagnosis it all makes so much sense. She did not start experiencing the dry mouth and eye until a few months ago. This experience has certainly changed the paradigm in which I think about the disease phenotype - it is so much more than just "dry mouth, dry eye."
I can understand how scary the diagnosis is to hear. When I first got my diagnosis, I was a wreck. My doctor saw tears rolling down my face and reassured me that this disease can be managed and the percentage of people with serious symptoms are smaller, so I didn't go into panic mode. For a while, every little thing I felt, I chalked it up to my disease. Now I concentrate on helping myself live a better life in spite of the diagnosis. I try to get as much info. as possible to eat better, exercise and take vitamins to help my condition. I don't know what the future holds, but I won't be defined by this disease. I have always been very active, and hope and pray I can remain that way. Attitude plays a big part in managing any disease and I will try to remain positive. The best of luck to your wife and her journey with this disease.
Thank you for sharing your experience. It has been a difficult time for me, I was diagnosed with Sjögren’s a year or so ago. I felt alone, and still do.
I understand 13:10
Thank you very much for your kind words. God bless you. You look beautiful.
Thank you for your bravery in sharing this.
Thank you 💐🥹
Thank you for this podcast. I have Sjgrones and I feel like I don't get told anything, so I'm trying to figure out why I feel like I do. Again thanks..
I am connecting some dots after hearing these discussions
Thank you. I first saw you in a video about arthritis. You were great.
I was diagnosed with Sjogrens in March after heavy thrush, a loss of taste, and a five-week flu. Then my mouth got worse. Five weeks later, I had lost 53 pounds, which was 1/3 of my total body weight. I'm now on Pilocarpine; I've been on hydroxychloroquine for lupus for the last 41 years.
I wish to become immuno confident. I also want to join the Sjogren's community. Since your Sjogrens Summit was virtual, can I access the workshops you presented? I definitely want to view the brain fog workshop.
You and this video have been extremely helpful. Again, thank you.
Thank you for the video. I have had symptoms for years and want to bring up the possibility of Sjogren’s with my PCP next month. I’ve been afraid of looking like a hypochondriac. But I also have EoE and Hashimoto’s. So it’s not a stretch that I could have Sjogren’s as well.
Again, thanks. I look forward to learning more from your channel.
All the stories about people who are sero positive, imagine having the symptoms without any explanation.
Yep with gaslighting drs. They’re also using the early sjogrens panel but most don’t even believe in it
@@stephaniecarl9938 that is my driving force- I feel so privileged that my labs were glaringly obvious. I can’t help but wonder how long I would have waited if that weren’t the case. 😭
What was the liver problem? Did I miss it?
She did not say...
We all need to start looking at lyme and tick bourn illnesses!!!!
I appreciate these stories. However I REALLY want what is the medical process to treat!!
Youth Restora capsules of Planet Ayurveda can be taken for the management of condition of Sjogren's Syndrome.
Someone needs to make education a Rheumatologists on this topic mandatory.
😅
Look forward to this. Sorry your voice is grating, scratchy.
Thank you for sharing and helping share your expertise. On Wednesday I’m going to see a rehmatologist for the first time to find out about sojourn. I’m so scared he is going to blow me off. I’m 66 now and in the process of having all my caps removed to put new caps on. Dentist for years have been telling me my dental problems are due to my dry mouth and drink more water. It is costing $30,000 that I can’t really afford. All the eye doctors I’ve seen have told me I have dry eyes and use eye drops. It is only recently the opthamalogist mentioned sojourn a condition I have never heard of. I will do whatever a expert
Can tell me to. Namaste Leslie