I'm Susie and just joined this support group. I found out last summer that I have Sjogren's, but have probably have had it for a few years. I was misdiagnosed as going through perimenopause and was on hormone replacement therapy for about a year - I'm off now and it's been great. I felt worse being on HRT. I have my doctorate in education and am currently a vice principal and have two small children (age 7 and 4). It's hard for me to find time to rest through the day, but I also am concerned about my work trajectory. Will I be able to continue to do what I studied so hard for with SS? One of my main concerns has been the dizziness and tremors that I've had to face at very unpredictable times. I'm concerned that when I'm talking to parents or students (or driving my kids!) I'll have a dizzy spell. The spells seem to come on whenever I am extremely fatigued and about once a month, but are very quick in nature. When I've had rest, it's better. Anyone else experience these dizzy spells? They are very short, it's almost like a head rush with dizziness or a syncope, without fainting. I've had MRIs with my head, neck, and spine, and they were all normal. My rheumatologist said that dizziness is NOT a part of Sjogren's, and my ENT said I had labrynthitis, which is inflammation of the inner ear. But if inflammation is part of Sjogren's - couldn't the inner ear become inflamed as well? Would love to hear if anyone else is experiencing tremors (I seem to have them mainly in my legs) and/or dizziness. Thank you for your feedback!
My theory is that inflammation is inflammation. Doctors divvy up the diseases into what is inflamed or impacted, but it certainly seems possible that the labyrinthitis could be part of the picture for you. Di you have a recent infection that could have led to the ear problem? Did the ENT talk to you about therapy for the labyrinthitis?
Welcome to the group. It's a great bunch of people here. I also have dizzy spells (a couple times I thought I was going to pass out). I too have sporadic something in my hand and legs. It feels like when you're about to fall asleep and your whole body jumps, is the only way I can describe it. I have not been diagnosed as of yet, so I can't tell you whether or not it's sjogren's. As I have read through everyone's posts in the last few months though, it seems that most of them have been diagnosed with more than one thing. I also worry about how long I will be able to continue to work as the brain fog is extremely bad on some days and I forget how to do things that I do daily. I work in accounts payable and I worry about messing something up really bad. I have a 21 year old and a 12 year old. I thank god for them daily.
Thank you for your feedback! I am not sure if the labrynthitis was related to a virus - very possibly. I took steroids for the labrynthitis and it helped some. Thanks for reaching out. It’s really comforting to hear from others about their experiences. Please let me know if you find anything helpful for the dizziness. Thank you for your posts!!