Hi everyone I am happy to be on here and hope that someone can help me with a question. Right before Thanksgiving i had a huge flare and finally came out of it 10 days ago ... It started with having some severe pain in my back then processed after weeks to swelling in my head which I know must have been my glands ... the pain was awful but it felt like pure toxins going up my neck and all over my head it was horrible . i was having issues talking, remembering names, my speech was very slow but the sick feeling was none i have ever experienced before.I try to be so positive but to be honest that scared the crap out of me ... Have any of you ever had that?? I was diagnosed last year with Sjogrens and another autoimmune disease no one knows what it is .. or even if I have another one .. . Thanks :)
Oh my, M. That sounds awful. I have experienced some of those things (especially the brain fog) but never collectively like that. I hope they get to the bottom of things for you. Please keep us posted on how you are doing.
o lordy. that sound horrible. i am new too w this crappy disorder. no advice. so scary there is no help or info in 21 century.
That sounds completely awful. In reading the posts in here everyone has different symptoms and such. It's so scary and frustrating. I have yet to even be diagnosed! It is a long awful process. I too have been told that I have an autoimmune, but no one has cared enough to actually dig into and find out what.
i know. i have only been on this train since last year. with four kids and a dh who works night most of the time..i am really on my own. I have tired to explained to my hubby to get different work for day shift so he could help take kids to their activities housework, homework etc.. but ppl dont always understand. nor do day jb..just appear for ppl like us. we have so much great info on other disorders...this one..not so much.. it seems. this must of been what it was like when ppl came home from war w ptsd and had visions of battlefield..former friends..etc i have surgery tomorrow am to get tonsil removed. i am having flare up now. its not gonna be a cakewalk. i am pretty concerned.
frustratedmom said:
That sounds completely awful. In reading the posts in here everyone has different symptoms and such. It's so scary and frustrating. I have yet to even be diagnosed! It is a long awful process. I too have been told that I have an autoimmune, but no one has cared enough to actually dig into and find out what.
Lady, good luck with your surgery. Please keep us posted on how you are doing. Its enough to deal with without going into it flaired up. Sending gentle hugs.
I know its hard but try not to take on other people's journeys as your own.It can make this thing very scary, as you have said. This is a great forum for support and to touch base with others that have the same experiences but we also have to remember that the path our SS takes can be very different from someone else's. It can be a fine line. :) I'm sorry to hear you are doing the long road to a diagnosis. I was there too, for many years thanks to one bad rhuemy. I hope they get to the bottom of things soon for you.
frustratedmom said:
That sounds completely awful. In reading the posts in here everyone has different symptoms and such. It's so scary and frustrating. I have yet to even be diagnosed! It is a long awful process. I too have been told that I have an autoimmune, but no one has cared enough to actually dig into and find out what.
Hope you are doing better! I had the exact same symptoms before my diagnosis. The sicca was such a non-issue in comparison to the neurological symptoms. I describe this as swirly-twirly gum drop brains. I recently watched the netflix movie Brain on Fire, about a girl who gets a mystery illness that ends up being a rare autoimmune called anti-NMDA receptor encephalitis. It’s extremely rare, and has terrible symptoms that I never had, but her early symptoms of extreme brain fog reminded me SO much of my sjogrens symptoms(obviously theres often a lot of overlap with different autoimmunes). Highly recommend the movie!