Sjogrens syndrome and chronic sinusitis/retention cysts link?

[Croft1987]

I've seen numerous specialists over the last few months to try and get to the bottom of my on and off again dizziness/unbalanced feeling.

I have been diagnosed in the recent past with an undifferentiated connective tissue disorder, including reynauds, polyarthralgia, ANA's and sicca, as well as most of the symptoms (but not yet a full diagnosis) of Sjogrens syndrome and limited systemic sclerosis.

I had an MRI done and it came back that I have chronic sinusitis and a retention cyst, after doing a quick google it seems that the two may be linked to Sjogrens...

Does anybody else with Sjogrens have this? Are they actually linked?

[weathervane]

Hi lauren i have sjogrens and ive had terrible trouble with my sinuses. I use sterimar saline spray a couple of times a day which helps and when things are really bad i steam a couple of times a day. I think it is linked to sjogrens and with immune system being low it as makes you more prone to infections. Can i ask you what is a retention cyst ?

[Croft1987]

Thanks for the response! I've never thought about the two being connected, but it makes sense when I think about it now!

Apparently it's cyst in the maxillary sinus area from repeated sinus infections

I don't really have any issues with my sinuses (or at least I didn't think I did)! But I have terrible trouble with dry irratated eyes and mouth, apparently one of the main symptoms is dizziness which explains a lot!

I've got an appointment to speak to my rheumatologist about it in a few weeks so I was wondering if they were actually linked

I don't really have any allergies and I don't get hay fever so I can't think of any other reason for it all!

[weathervane in reply to Croft1987]

I hope you get some good advise from your appointment , its hard to keep it all under control xx

[Hidden in reply to Croft1987]

Hi. I have almost exactly the same issue with what they call disequillbrium -apparently as part of my confirmed Sjogrens. Mine was confirmed by lip biopsy last year but I was previously diagnosed with RA (which primary Sjogrens can mimic). My ANA pattern fits more with Scleroderma than with Sjogrens and I do have many symptoms of both. My main problems for the last few years have been with poor circulation and small fibre neuropathy. I'm five weeks into Mycophenolate now. No tolerance issues so far - unlike four other DMARDs I've tried - but balance problems and tinnitus plus over hearing are just the same

I've never yet been seen by an ENT but I do see a tinnitus counsellor next week and have dry nose as well as eyes. I plan to push to see an ENT to assess my inner ears and sinuses because I believe sinus problems are extremely common with Sjogrens and wonder if this might account for my disequilibrium.

I have a theory that this is one reason why our teeth and taste buds are often so badly affected with Sjogrens. If we breathe through our mouth a lot at night because of stuffy nose or sinus problems (and many are unaware they do this) then it will inevitably cause gum disease and dental decay.

So it seems to me that you are most probably onto something with the Sjogrens connection.

[Croft1987 in reply to Hidden]

I'm exactly the same!!! I've not had the lip biopsy yet, but I have ANA more in line with systemic sclerosis but nearly all of the symptoms of Sjogrens Syndrome, not including the dizziness I mainly struggle with fatigue, joint pain and neuropathic pain.

The audiologist said my hearing was pretty much normal with one ear a little worse than the other (since the appointment I've had mild tinnitus in that ear)!

I'm curious to see if the rheumy links them together, I've never had any major issues with my sinuses, especially to the extent that'd cause a cyst so I can't figure out where it's come from!

I definitely breath mainly through my mouth when I'm asleep and go through at least a pint of water during the night, maybe that's why!

It seems though that dizziness is the main symptom of the cyst and chronic sinusitis which would explain a lot!

[Hidden in reply to Croft1987]

Thanks for being the first person I've found who has ever asked about dizziness/ balance disorder in relation to sinus problem!

I've had the disequillbrium for about two and a half years now and the only time it entirely resolved was when I spent six months on steroids. It came back within a month of tapering off and has been an ever present issue since. It never even occurred to me that it might be sinus related though - I've only ever thought of inner ear or my small fibre neuropathy and proprioception issues as the neuro presumed. I will mention this idea to the audiologist whom I see a week today. I have been referred to ENT four times now but they keep reading these referrals and just passing me on to audiology or back to GP with prescription suggestions - it's really frustrating! You've inspired me to focus on possible sinus issues because I think I may have a deviated septum and feel something is pressing behind my nose and upper front teeth all the time. X

[Croft1987 in reply to Hidden]

I kept getting told that it must be down to anxiety (which I think it's definitely aggravated by), but I stand by the fact that something's triggering it in the first place!

It's so frustrating when you know something's not right but you're being told otherwise!

It's scary being told I have a sinus cyst but at the same time I'm relieved as it's the first real link I've had to solving the dizziness issue!

I'd be really surprised if it wasn't down to sjogrens!

Good luck with the audiologist!

[Hidden in reply to Croft1987]

Thanks. Anyone would be anxious about the stuff we have to contend with. No one dares to mention anxiety to my face but heck knows what they write on my notes. I've been copied in once or twice and been horrified! Then they get an icy swipe from hell from me in the form of an exceptionally cutting letter of formal complaint! Three different doctors have learnt not to mess with me behind my back!

Stick to your guns - you don't get dizzy and lose your balance from anxiety?! Nor does a sinus cyst spring up from the workings of the mind! X

[Croft1987]

Just to update as I noticed my post had a follower :).

I saw the rheumatologist, she doesn't think the dizziness is related to my condition and has referred me to an ENT surgeon and opthomologist for investigation into something called cogans syndrome...

So here we go again!

I'm standing by the fact that it's linked to my sinus though, I get intense pressure headaches around where the cyst would be!

[Hidden in reply to Croft1987]

Interesting! I looked up Cogans syndrome, and at least it is an acknowledgement that dizziness can be autoimmune in origin...

[almiller]

Hello I came across your post I too have SS with mixed connective tissue disease with lupus like symptoms and I also have the retention cyst in my left maxalry sinus cavity. I found out when I had a MRI done on my head when I blacked out and fell Dr was trying to figure out why I blacked out. So now I have a referral to go to ENT I see them next week. I am still suffering with sinus issues and breathing problems plus I was diagnosed with sleep apnea so I'm sure it's all connected.