Sjogren’s Syndrome – Introduce yourself and meet others

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?

I was browsing the Mayo Clinic website and came across a visual of the symptoms of Sjogren's. I have 5 out of 6 of the symptoms. How is Sjogren's diagnosed?

I am being treated with medication, followed by a neurologist. MRI as needed. They stopped PT due to not being able to control my movements. I twitch and jerk and cause more damage. I am sure they will try PT again as soon as they can get some of that under control. They tell me to avoid stress, eat balanced meals and drink Gatorade. They have me set up to be able to instantly message doctors and will set me an appointment asap if needed or make med adjustments over the phone. They just wait for the next thing to happen and try to come up with something. I actually have a team of doctors. A rheumatologist, a neurologist, an optometrist, a primary, a nerve doctor, a nerve surgeon, he does RFAs on my cervical where I have had 2 neck surgeries, one failed. And a physical therapist. I am sure there are ones I forgot at the moment. The hospital I go to has a big network in our area. St. Luke's.

Don't know if anyone has answered this. It is a blood test and then a lip biopsy.

@ateaseana Welcome to Mayo Clinic Connect. I see that someone has already answered your question! Have you seen a doctor about your symptoms? Sjogren’s is usually best managed by a rheumatologist. Your primary care doctor can make a referral for you.
What symptoms do you have?

To Dianaislooking: Yes, please tell what they are doing for you. As a fellow Sjogren's fighter, and someone who has Sjogren's neuropathy, I want to know all you might learn. Nothing is too trivial. Some of us might follow in your footsteps. I read your story and I find it both scary and inspiring. Please share. I am currently doing IvIg. Have you considered doing that?

Hi there also have Sjogrens lupus nueropathy and pots/ Dysautonomia. Have u found relief with ivig ?? That was what was suggested for me when I went to Johns Hopkins.

What is Iving?