I was dx with SS (what is SjS) 2/09, after more than 3 decades of seeking help. I hve had several dxs; CFS (everyone thought I was out to lunch, even all the specialists ( only the Higher Power knows how many MDS I search out). Then maybe 10yrs or so I was dx with fibro, well I felt thrilled, now maybe I have a real disease. Oh no no no--- it still wasn't a real disease. You guys know the story all to well. I had to find out what was going on in my body (not my head) I searched for knowledge anywhere and everywhere; I read, became my own advocate, asked questions during MD visits. I was on a MISSION... several MDs told me to stop reading info r/t what ever the issue was at that time. That made me more determined , so I went to college and became an RN. Now I,m still searching, My neuro and rheumy aren't that knowledgable and want to concentrate on the fibro issue, I don't get it!?!?!? I have 5 of the 6 signs for Primary ss. My lip bx was positive stage 4 -- not good., On a positive note, my primary MD is hollistic in her practice. She is a great advocate. Now on 3/20 I am going to the only Sjogren's Center in the USA. It is at John Hopkins Med Center in Baltimore. All the SS specialists are there; Rheum, Neuro GI, opthamologists and all the rest. My focus is neuro. I'm experiencing the hot, tingling, painful sensations in my hands and feet, The character of the pain is radiating up into my arms and legs. They have several tests scheduled for me. I'm excited, hopeful and petrified. I'll keep .you posted. Thank you for listening to me, I'll listen and help you as well.
Hello Ceceraven :)
Welcome to Sjogren's world. Many in here took a lot of years to get a diagnoses. I would have thought that with a positive lip biopsy - you should have yours!
I hope you find this site useful. It's certainly friendly and supportive,
Take care - Scottie :)
Ceceraven, Welcome!!!!! I hope you have a productive trip when you go for your visit. Keep us informed if that is ok. We are all glad to have you here, but wish you didn't have these things to deal with.
susanep :)
Ceceraven,
Welcome to Sjogren's World! ;) ;)
Isn't it amazing that it still takes some of us many years to be diagnosed? You sound like me; I was on a mission to find out what was wrong with me!
If I understand correctly, you have a Sjogren's dx now, but are looking for more information about the neurological symptoms you're having, and how to manage them, is that right?
I wish you luck with a productive visit to the Center and some answers.
Please feel free to jump in with any comments to others, and keep us posted. We're glad you're here, and hope the site is as helpful to you as it has been to me and so many others. :D
Take care,
Melinda
After a 6 year runaround, I was finally diagnosed positively with Sjogrens at a teaching /research hospital here in Iowa. That is after seeing numerous individual specialists that I am sure only "doctor out of a textbook!". >:( I heard everything from "its the cat's fault - didn't have a cat when it started---- to some kind of cancer but you are not sick enough. :'( :-\
I recommend going to one place where all your specialists are there. Your records are all there and they can easily consult with each other. You don't get an "ego" problem either least the ones I have sure do not have one. I always get the main dr and one or two interns and they go over tests results and ask each other questions and me questions to LEARN!
Gosh what joy to actually be listened to! Good Luck on your visit!
Welcome Ceceraven. My diagnosis is still up in the air so can't offer much advice there but welcome to Sjogrens World.
THANKS GUYS :). I appreciate all your responses. I feel like i'm in Sjogren's heaven; after one day I feel connected to people like me :o :o. Really this is amazing. I can share something and wonderful people listen and care and share ......WOW...... I am humbeld Thank all of you,,,,,Meld256 to answer your questions----yes I have primary SjS (pos lip bx stage 4) and I am experiencig new neuro sxs. I will let everyone know my experience at John Hopkins on March 20&21, Be kind to yourself, Ceceraven
Yes, it's amazing to know that others actually understand and care, isn't it? I cannot tell you how "theraputic" this forum has been for me. It is a welcoming and safe place to come to anytime. ;)
Thanks for clarifying the answer to my question. I sincerely hope you get answers at the Center, and ideas on how to manage the symptoms. We'll look forward to your update.
Keep posting!
Melinda
Just want to say WELCOME! Glad you found us.
I was so happy to find the forum about a year ago. This is my second year of having the diagnosis of SJS. It was a long haul.
I was happy to find some folk that I could talk to and who understood.
Keep us informed.
Duchess
Welcome Ceceraven:
Sounds like you've managed this very well, at least at this point.
So many of us never get a true diagnosis, and struggle with that.
After many years I've accepted that the key is GOOD support and advice, which I get here.
AND finding the medications and OTC items and routines that ease my symptoms.
Looking forward to hearing more from you.
Hugs
Elaine