Neurological problems

Hi! I was diagnosed with pSS last year at the age of 33. I have been having for a long time a bit of pain in different joints and have been feeling fatigued, but i started having new problems, among others: dizzy, nausea, difficulty finding words. They did all kind of tests (MRI of the brain and brain vessels, lumbal puncture, blood tests, lip-biopsy) and i got the diagnosis. I did have some changes in the white-matter on the MRI, but several doctors looked at the images and agreed that it was not related to Sjögren. Since then, i have had the occasional speech problems, fatigue and the feeling that my brain is sometimes in slow-motion. What is really worrying me, is that in the last 3 weeks this has been constant (very hard to do my work which is intellectual), and i have been having this dizziness (like going through an air-hole when on a plane, but even light headiness when i go) and even discrete problems when holding things in my hands. I am really worried and i am of course thinking it could be vasculitis, but i so don´t want to call the rheumatologist who the 3 times i talked to has always been telling me i worry too much. He didn´t listen to me last year when i was having pins and needles in my hands and feet adn could barely stay on my feet, telling me it was just stress, when it proved to be a serious vitamin b12 and iron deficiency, caused by atrophic gastritis related to Sjögren. So since last year i habe been substituting with b12 shots and iron and my levels when last checked in june were ok. The is also a suspicion of SLE in my case, as i have the anti-Ro antibodies, low complement and get a rash on my face whenever i am in the sun and feel really bad/tired/nausea afterwards.

Without asking for any medical advice, is anyone else experiencing something similar? Could it be vasculitis related to Sjögren? Other ideas?

All the best from Sweden,

5 Replies

  • Hello....I have SS and I now seem to have Mixed Connective Tissue disease or Overlap syndrome. I have peripheral neuropathy in both feet and my 'undercarriage' and now tingling of my nose and top lip. Amitriptyline has been very effective so far.Like you I have anti Lo and RA s and have rashes on my face. I also talk gibberish sometimes and my memory is terrible.

    I am wondering if I am on my way to having Lupus too.

    Could you change your Rheumatologist ? He doesn't seem to be very helpful.

    Best wishes from a cold UK to much colder Sweden !

  • Thank you for replying :) My rheumatologist is the expert on Sjögren in this region, so changing to another one, might not be the best idea. I will try to contact the nurse next week and see if i can get through to talk to him.

    All the best,

  • I have a similar type of Sjogrens to that you describe -very neurological in the way it presents. Although I'm 53 I'm pretty certain I've had it for decades. The rheumy who changed my diagnosis from RA to primary SS on strength of positive ANA, high inflammation markers and positive lip biopsy, told me that the white matter on my brain MRI is also something one might expect to find in Sjogrens. I have small fibre neuropathy and Ganglionopathy and have asked many times if I might have a type of vasculitis but 3 rheumies have said I don't as negative cryoglobulins or rash. None the wiser but I think SS accounts for much more than even some rheumies realise. The last one I saw told me in January of this year that I categorically didn't have a connective tissue disease. He was supposedly an SS expert and he was wrong!

  • HI, I was diagnosed with APS (Hughes syndrome) first, which along with SS, gives me similar symptoms. Have a look on the uk APS site, it relates to clotting, sticky blood. May be worth looking at.

  • Morning. i was diagnosed with sjogrens several months ago after being misdiagnosed for many years. My patience was (and still is) pushed to the limit daily as I have random memory problems (accompanied by all the ailments you mention above re: aches, pains, nausea and dizziness). My frustration comes as (pre diagnosis) many would laugh or become agitated at my random memory loss as I struggled to get words to come out of my mouth. Once diagnosed, I was happy to at least put a name to what ails me and know that I "was not alone" in this ugly journey. Unfortunately the elation of finally being diagnosed wore off as those around still don't understand. At a birthday party the other day I was having a nice discussion with a family friend (who I have known for many years), she asked me to inform my sister that she had brought something for the party and that it was in a bag in the kitchen. I literally took six steps toward my sister (during which time i struggled to think about what i needed to tell her and how to get the words out) I became confused, I knew what i had to tell her but couldnt get it straight in my head so that it would make sense as it came out of my mouth. the problem came as I advised my sister (as I pointed toward the woman whose message I needed to relay), i literally couldnt get the words out of my mouth and no longer recalled her name. As I struggled with her name (my sister who has done this several times) became very frustrated and yet again rolls her eyes as she prompts me with the name. I find that I no longer engage in many conversations to avoid such incidents. Every day is a new challenge for me (as is for all that struggle with this ailment) I never thought that the ongoing frustration caused by those around me is worse than the disease as it causes me great angst. Crying about this is obviously not an option due to the dry eyes (I now have permanent plugs which don't seem to be working). I am somewhat appeased as I am now a member of this community and read and interact with others in the same position.

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