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Sjogrens, SFN, unbalanced walking, nystagmus

Posted by nurse49 @nurse49, Mar 27 10:31am

After seeing a slew of doctors, ENT, Opthamologist , Neurologists, neuro Opthamologist and a neuoro otorhyngologist I am at a loss. I have double vision only on rightward gaze and nystagmus on the left. MRI AND MRA of the brain are clear as well as CAT SCAN
I am getting worse each and everyday with no answers. I’ve had Sjogrens and SNF since 2012, but probably before then. I am 74, a former ballroom dancer for over 40 years
I cannot deal with this . I cannot walk without discomfort of feeling like I am going to fall. I also have ossilopia which is like the world is moving past me ( not vertigo ) I recently had a VNG/ENG test which shows ? Still waiting for my doc to call but the doc that did the test said it is definitely not my ears? Any thoughts? All labs and vitamin levels are perfect!

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cantek | @cantek | Apr 4 5:54pm
In reply to @suetex "My neurologist would certainly say it's a possibility. I'm not going to try to diagnose you..." + (show)
@suetex

My neurologist would certainly say it's a possibility. I'm not going to try to diagnose you but obviously, someone does. Try a new rheummy that has Sjogren's experience. I will post when I know the Rituximab works. I start this Tues. And there is another monoclonal in the works that works on a different part of the immune reaction. I've got that in my sights, too. Hang in there and be the squeeky wheel. It pays off. Our thoughts are with you.

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I would be very interested in how you do on Rituximab.
I have failed to wean off of Prednisone 3 times while on Imuran and Mayo recommended Rituximab.
My Rheum thinks the last flair was due to a subclinical UTI so we shall see. Im going down 1 mh every two weeks and will be at 6 mgs next week.
Ive read that patients have gone into full remission on Rituximab!

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suetex | @suetex | Apr 5 9:56am

I will certainly give as full an account as I can. My initial thought was what are you taking the pred for? And are you sure you aren't reducing too fast? (Having been on pred in the past.)

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