Eustachian TUbe DYsfunction

[lilibetlizi]

Has anyone with lupus got/had eustachian tube dysfunction? I have had major problems and prolonged steroids and wondered (whilst I await diagnosis and first rheum appointment) if this is due to the lupus? I also have some sjogrens symptoms so may be overlapping with that?

[Hidden]

I don't know the cause of my problem yet but I have sudden onset tinnitus whic was not explained by audiology tests. I don't have any visible sign of a problem affecting my outer or middle ears apart from some dryness and lack of wax. My tinnitus seems to relate to other issues affecting my balance and gait and proprioception so I suspect it is part of my confirmed seronegative Sjogrens related small fibre neuropathy.

I will see a tinnitus counsellor next month and really hope to get to see an ENT comsultant who knows a bit about autoimmunity. I'm not sure if this helps or not but I believe it's a common problem for many with connective tissue diseases.

[Georgie-girl]

Yes Lili, I have Eustachian tube dysfunction that comes and goes and is, as Twitchy said, quite common in CTD. I have sjogrens so I guess that's another added pleasure for us with these disorders. It can get quite painful at times when everything gets blocked because the tube won't open so hopefully your rheumatology appointment will help with this. Good luck.

[Freckle1000]

Hi. I have SLE with sjogrens and I 'strongly suspect' my sister and father have Sjogrens too.

Both of them have had eustachian tube blockages - my sister with recent major swelling that lead her to a recent quick referral to an ENT specialist. My father has lived with eustachian tube blockage all his life along with peripheral neuropathy. For the neuropathy - he's had several invasive investigations - including two very un helpful operations. No cause has ever been established.

I've finally nagged both obstinate creatures to get tested for it.

[Paul_Howard Partner LUPUS UK]

Hi lilibetlizi ,

It is worth mentioning this symptom when you see your rheumatologist in case they think it is linked to your lupus/Sjogren's or requires further investigation.

Good luck with your appointment. Let us know how you get on. If you need more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...