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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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nurse49 | @nurse49 | Jul 6 11:46am
In reply to @becsbuddy "@nurse49 I’m a little concerned. You mentioned all the doctors that you’ve seen, but no mention..." + (show)
@becsbuddy

@nurse49 I’m a little concerned. You mentioned all the doctors that you’ve seen, but no mention of what they did to improve your situation. Did the ophthalmologist suggest ways to improve your double vision? I had to do vision PT that really helped my double vision. And did the neurologist recommend physical therapy to improve your gait? And how about a cane or walking stick? At the least, ask your PCP for referrals to a vision therapist and physical therapy. Also, ask your PCP if they have gotten reports from the other doctors you saw and if there are any recommendations. These small steps will help you get control of your situation and become your own advocate. Does any of this sound reasonable to you? Will you get back in touch and let me know how you’re doing?

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Thank you for your concern
I finally got a diagnosis, after finding the right neurologist.
Degenerative Cerebellar Ataxia
So I’m not crazy, or drunk after all. Unfortunately there is no cure. We will see how this plays out.

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Langold | @rarelybees2889 | Jul 7 8:30am

You can be seronegative with Sjogrens and still have it
See Sjogrens Advocate for more

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elisabeth007 | @elisabeth007 | Jul 7 9:59am

Hope you feel better soon. Has a pharmacist or pharmacologist reviewed your medications to determine if there are potentially any interactions worsening your condition? i had nystagmus in my right eye shortly after a laser procedure on my right eye —-it eventually went away and hasn’t come back. i hope you feel better soon. What eye drops are you using in your eyes? Albeit my neuro-opthamologist treats my nystagmus, my cornea specialist is the one who finds solutions to keep my extraordinarily drug eyes as comfortable as possible. I’ve been on rx autoimmune drops for years, intially .05 cyclosporine (Restasis) and for the the last year or so the stronger version, .09 cyclosporine, Cequa brand name (no generic). i’m also supposed to wash my eye lids twice daily ideally w tea tree foam or hypo allergic baby shampoo and put heated eye pads on my eyes 1-2 x/day when my vision is really bad and/or eyes are itchy. wishing you all the best

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