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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nurse49 | @nurse49 | Mar 29 8:08am

In reply to @becsbuddy "@nurse49. Have you gone to a university medical center or a large comprehensive medical center of..." + (show)

What was your diagnosis?

suetex | @suetex | Mar 29 11:48am

I have some of what you mention: Sjogren's.SFN, loss of weight borne balance, also muscle wasting, some pain, but not a lot. No nystagmus or eye envolment. I have been taking IVIg since last Sept. and continue to worsen. Now plan to add Rituximab to my treatment. Will post with results. 3 of my docs have high hopes for it.

Becky, Volunteer Mentor | @becsbuddy | Mar 29 1:45pm

In reply to @nurse49 "What was your diagnosis?" + (show)

@nurse49 My diagnosis was lymphocytic lesions on my brain (chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids). Big name for a BIG problem. The only symptom I had, early on, was vomiting, then I couldn’t walk, swallow, or speak right. I thought I’d had a stroke but my PCP didn’t think I needed an MRI so I asked one of her practice partners for one. Thank G-d because I went straight downhill from there! But, now I’m back and on Mayo Connect! So, keep advocating for yourself.

suetex | @suetex | Mar 30 10:45am

Nurse49, this is for you to explore your memory. One of my neurologist (he's a neoro-muscular expert and has a family member with Sjogren's) has a theory that Sjogren's get started with a toxic reaction to something. Perhaps a medicine that had undesired side effects or some other outside agency. In my case (he reminded me because I had forgotten) it was one of my first glaucoma drugs that didn't agree with me. My legs felt funny from them on. That was 2013. My balance problems and muscle wasting started much later. And I have never had typical neuropathy symptoms which made it impossible to diagnose. It wasn't until a new rheumatologist saw it and diagnosed Sjogren's. So take a trip in the "way back machine" and see if you fit the profile.

sbtheplumber1 | @sbtheplumber1 | Mar 30 3:51pm

In reply to @nurse49 "Thank you… my physicians I have seen are with the Stony Brook University, as well as..." + (show)

Thank you for sharing that link if I don’t get some answers on my back and neck in a couple weeks I might call them .

nurse49 | @nurse49 | Apr 2 5:34pm

Update: I spoke with my PCP yesterday and she is determined to find the answer. She contacted a colleague at UMASS, and after discussing my case , they came up with “you may have had a tiny stroke in the brain stem”. Not reassuring, but will follow up. Still waiting for the other doc to give me my VNG/ENG results from last month !

j77 | @j77 | Apr 3 10:42am

In reply to @suetex "Nurse49, this is for you to explore your memory. One of my neurologist (he's a neoro-muscular..." + (show)

Hello!I just read your post because I am trying to figure out what happened to me and if I have Sjogren's.Do you think it is possible a bad reaction to an iron infusion could Bring it on?I had a one time dose of 1020 mg for heavy periods for years.I had a reaction days later and can barely walk now.I have extremely dry painful eyes with blurry vision and floaters that can't be in the sun.I also have extreme muscle weakness all throughout my body.I have had several positive ANA's,but the Rhuematologists tell me it is not autoimmune.I have had thryoid disease for years and Lupus runs on both sides of my Family.The neurologist I am seeing us very confused because he has not seen anything like it.I know the muscles are definitely involved.I could not swallow or eat at all at the very beginning and my primary thought to give me steroids which gave me the ability to eat again.

Becky, Volunteer Mentor | @becsbuddy | Apr 3 12:02pm

In reply to @j77 "Hello!I just read your post because I am trying to figure out what happened to me..." + (show)

@j77 I’m so sorry that you’re going through this, and have been for quite some time. I can’t even imagine how frustrated you must be. If you would be interested in going to the Mayo Clinic, here is a link for appointments: https://mayocl.in/1mtmR63.
Do you think a possible appointment would help you?

suetex | @suetex | Apr 3 4:33pm

In reply to @j77 "Hello!I just read your post because I am trying to figure out what happened to me..." + (show)

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.

j77 | @j77 | Apr 3 4:48pm

In reply to @suetex "My neurologist would certainly say it's a possibility. I'm not going to try to diagnose you..." + (show)

Thankyou for responding!I think it had to have been the iron infusion or possibly covid.I am sure the years of anemia from the heavy periods wore my body down too.It seems like alot of diseases can come on from low iron too.I have to try to find a Rhuematologist that treats seronegative cases.It took 20 years for them to diagnose my mom's Lupus.I just wonder if I have had another autoimmune disease and it took the iron infusion to really set it off.It is so crazy going from Healthy to your whole body not functioning and the specialists can't really find anything.