Sjogren’s Syndrome – Introduce yourself and meet others

Hi John,
i was planning on joining the sjorgens foundation. i also go to the sjorgens advocate as well. no i havent talked to my rheumotologist about my sleeping problem yet. i probobly should.

I likely had this for a few years, but was newly diagnosed with a lip biopsy. I had a more severe flareup, which led to biopsy, but vasculitis and other signs did not come up in blood work. I am in more pain and have more severe and a wider range of symptoms than I expected. Rheumatologist seems reluctant to meet before our appointment in late January (made in June when she thought she had ruled out Sjogren's). Would like to know more about what to expect and perhaps find another provider in the NYC Metro area. How can I connect with other Sjogren's members?

I have had what the Brits would call "a turn-up for the books." Saw my rheumatologist two days ago and she has done a 180 on me. I told her I was on Rinvoq now (found something that covers Crohn's plus RA per her instruction.) And she reacted strongly against it. Says it is contraindicated for cancer patients under 2 yrs from remission. But she is the only health professional I have talked to who has heard that. Immediately called my GI doc and got me canceled. Also says that if I had any pain in my legs it is from compression in my back. Where-as before, I had at least some inflamatory artheritis. And I have had a Negative EMG about a year ago. Will refill my LDN, 'though. Now talks of it like she uses it regularly. (another switch.) I am going to get MRI of back she wants and go see pain specialist and we will see what they come up with. Am I in pain? Sure, what else is new. I could only do one sit-to-stand in PT today. Where-as before I could do at least 10. Will be seeing oncologist later this week to confir.

@cblue Are you living in the New York area currently? This website might have some leads on finding other patients:
https://www.sjogrensadvocate.com/
The Genetic an Rare Diseases department within NIH should be able to help you find a new rheumatologist:
https://rarediseases.info.nih.gov/
I hope this helps!

Thanks! I’ll check these leads out. Yes, I live in the Bronx, NYC Cheryl

I have had MCTD since 1996. Dry eyes are part of my life, but I use Systane and/or Pataday during the day: depends how gritty my eyes feel. Hydration in older age is a "thing"; constantly working on getting better at drinking enough water. I've just gotten over another salivary gland infection, too. I have had a lower left leg (calf) pain at night for 7 years. PT thought it might be part of hypermobility as most pain is where tendon attaches to tibia. But, my legs are sore to the touch a lot of the time. I've been using microwavable moist heat, edema massage (toes to torso) and leg stretches, including leaning against the wall, legs up. However. My pain doctor offered a "genticular nerve block", which refers to nerves along the knee and I've had the test injections and going for the block in November. People I've talked to say it can last a year or more. Always seems better when I've had a long walk during the day, but not dependable. EMG, MRI, etc have been normal.

I posted elsewhere I’m newly diagnosed I must’ve had this for two years, but was in the early stages though it described my Esophageal nervous so my treatment focus was on that and that’s a long story. I won’t bother everyone with. Auto immune diseases were not considered the cause. They proceeded another direction had several surgeries, I’m wondering if this flareup I’m having those who’ve had this longer does it ever go in remission?

Hi my fellow warriors! I have had Sjogrens for half my life and I am past 60 now. Most recently it was discovered it has moved to my brain. Yep, the dreaded CNS Sjogrens. Long form Central Nervous System Sjogrens. My brain and spinal column are spiderwebed and with 9 distinct lesions. They thought I had MS and Sjogrens, yeah that doesn't happen. Anyway, more meds trying to get it under control so far is also not working. I am allergic to plaquenal! They have me taking half dose anyway, which really messes with me, but it's the only thing they got to fight it with. A multitude of other meds go along with it. 3200 mg of gabapentin, 40mg of baclofen, 750mg of oxcarbazepine, each day. That's just to name a few. To you who ask, there is no cure, only management. This disease is not for the weak of heart. I fight every day, and eek out of each day all that I can because my tomorrow may be the last I can function, eat, use the restroom and a hundred other things. When did mine enter my brain? Well, remember I told you they had me diagnosed as having MS? It was never MS. It was always the Sjogrens. Would I have had a better chance had they diagnosed me correctly? YES! The meds they gave me for MS they had to take me off of really fast. It caused havoc all over my body. To include the onset of Lichen planus. I lost most of the skin off my arms from the wrist to the shoulders just to name one. Learn to be your own advocate! Ask questions, lots of questions! Read everything you can. Keep a notebook, a small one in your purse, one by the phone, one to consolidate your notes. Write down how you feel and where you feel it. Write how it felt, how long it happened. Etc, etc. You get my dift. Spend time with that best friend and talk to them, cry on their shoulder, and let others help you.
Above all, keep fighting! We warriors don't go down easy, so fight on.

I am going to post this separately. You can't have MS and Sjogrens I have found out. The spots on the brain if you have Sjogrens is Sjogrens. There is little information on CNS Sjogrens. My doctors tell me I am the first person they have had to have it. They tell me I am teaching them. Good news for anyone coming after me in this area. There is no place in my state that treats CNS Sjogrens. Yes I have to be my own advocate! I am the only thing going! Lol

@dianaislooking. Don’t you just love it when you’re ‘the only one!’ You certainly have a great spirit and outlook on life.
How are you being treated?