Sjogren’s Syndrome – Introduce yourself and meet others

Yes, I would ask for the lip biopsy. That is the definitive text.

@susanh824 thanks so much for responding. I am trying to convince my drs to do this. They are hesitant because of my oral LP, and I understand that. Does anyone ever get any other weird changes in their body from Sjogren’s. For example, the inside of my nose just started to have the symptoms of “falling asleep” like when your arms or legs do. It’s a very weird sensation. Also happening in the same period of time, it feels like the muscle, not sure what to call it, of my inner elbow, knees, where arm and chest meet, bridge of nose, wrists, and opening my hands in the mornings have all started to become very uncomfortable and tight. This happened all of a sudden, all in the period of a couple days. My lips have gradually gotten more numb over 2 years and uncomfortable. They stopped feeling like they were on fire a couple months ago. Doctors just shrug their shoulders when I tell them amount my lips. Does any of this seem like it could be Sjogrens?

I use Cera Ve creams and Working Hands several times each day. They help.

I cannot take either of the 2 main meds to help produce saliva because they make me sweat
(big time!), so I am resigned to having a thermal mug of ice water on the nightstand. Some nights I drink from it almost every hour. That makes for a rather poor sleep.

My other challenge is Raynaud’s Disease. Ice cold fingers and toes make winter difficult, but I still walk everyday ( with crampons) and snow shoe as well. I have to limit the time to about 25 minutes
outdoors.

@susanh824 thanks so much for responding. I am trying to convince my drs to do this. They are hesitant because of my oral LP, and I understand that. Does anyone ever get any other weird changes in their body from Sjogren’s. For example, the inside of my nose just started to have the symptoms of “falling asleep” like when your arms or legs do. It’s a very weird sensation. Also happening in the same period of time, it feels like the muscle, not sure what to call it, of my inner elbow, knees, where arm and chest meet, bridge of nose, wrists, and opening my hands in the mornings have all started to become very uncomfortable and tight. This happened all of a sudden, all in the period of a couple days. My lips have gradually gotten more numb over 2 years and uncomfortable. They stopped feeling like they were on fire a couple months ago. Doctors just shrug their shoulders when I tell them amount my lips. Does any of this seem like it could be Sjogrens?

Have you tried over the counter Biotene? Comes in mouthwash , toothpaste and a mouth spray. I sometimes get dry mouth. Comes on suddenly I had tested slightly positive for lupus and Sjogrens at neuro and negative at rheumatologist. I think when you have are in the midst of an outbreak you show positive.

Have you tried over the counter Biotene? Comes in mouthwash , toothpaste and a mouth spray. I sometimes get dry mouth. Comes on suddenly I had tested slightly positive for lupus and Sjogrens at neuro and negative at rheumatologist. I think when you have are in the midst of an outbreak you show positive.

I tried the OTC stuff but it didn’t help. Although I haven’t tied the toothpaste. It seems like I’m always in a flare up, mine has gotten now annoying since Covid. Suffered the loss of 4 family members passing ( not Covid) then 3 dogs. I’ve not been the same especially after my brother my best friend and longest love of my life.

Labs for all autoimmune diseases and a petscan or brain scan and scan of the spine seem to me to be in order !! I'm so sorry. I know what you mean about the doctors. I get the same thing because I have odd issues going on and I feel like they think I'm faking it.

So I have swallowing issues. I saw the radioactive dye food go up instead of down, right where I feel that happens. I felt so redeemed, only to find they wouldn't even acknowledge it!
Fast forward six months, and a group of doctors researching colon cancer found a new organ, in the mouth behind the nasal cavity., they are salivary tunes.
Like, how many times do people have to describe something before irs real? The medical literary previously said patients just imagine these sensations...
I guess the infection was all imaginary too 🙃
Newly discovered salivary tubes, look it up, show your friends, it may be in your head, because that's where they're located 😉