Lupus questions?

[Loopydroopy]

I'm still very new to this and am asking for some info. You all seem so knowledgeable. 1st has anyone had hearing loss due to auto immune stuff? 2nd I have a sore tongue with splotches on it almost like my tastebuds are gone?? Any feedback would be helpful.

[Mean-time]

I have been through many exams, MRI, CTSCAN on my right ear.... no results. I've researched & Sjogrens seems to be involved??? It's all guess work. Wish I could be more help...attacked from within😷😳

[cantello]

I've had lupus for 15 years and have to have grommets inserted every year to improve my hearing. The problem is lupus sees them as a foreign object and keeps kicking them out of my ears!!

[EOLHPC]

Yes: I have infant onset lupus + Sjogrens and am 63. In my 30s I was diagnosed by ENT with vestibular neuritis during a persistent flare of vertigo. More recently, the medics testing my hearing have told me this form of neuritis happens in some lupus & Sjogrens patients...and they said this can be associated with hearing dysfunction. My hearing tests "ok", but, even so, I cannot understand the significance of certain levels of sound and these medics say this is due to an immune dysfunction of a neurological type which is part of my widespread neuro cerebral signs & symptoms. I.e. This neurological problem means that although my hearing function is "ok" my brain cannot actually "understand" certain sounds well enough to properly register the meaning of what I am hearing...I sort of understand what I'm being told by these experts...😏

This link is the best I've found in this subject:

vestibular.org/autoimmune-i...

Am not confident about commenting on your tongue symptoms. But I can say that my version of immune dysfunction & connective tissue disorder involves lots of oral signs & symptoms, especially on my tongue. I see a periodontist who is expert in cases like mine. She has helped by giving me an effective treatment plan...which is arduous & time consuming but does at least make it possible to keep most oral signs & symptoms at a relatively more bearable level 😉

🍀🍀🍀🍀 coco

[Cctexan3]

I also cannot comMent On your specific case, but in my case certain sounds drive me nuts. It's usually high pitch sounds or extreme of clapping like on the price is right or any game show. I also have a lot of oral problems like you described

I've had ulcers in my mouth that have lasted so long that I actually had to have one biopsied. It'd been there for seven months that hardened . It was not cancer. There are times when I cannot taste anything except the very spiciest of things, which upsets my stomach. I have heard that lupus ulcers are usually on the top of the mouth or the sides. But I get mine on the tongue or around the teeth I have Sjogren's also so I don't know how that pulls in the play

I too have found that I have vertigo and I have never considered it before this as part of my lupus. I had a problem with a ruptured eardrum him but I always have had problems with my hearing and now I lose my balance and it feels like I have liquid in my ear weird! I'm glad I read your post today all of y'all have a great new year

Sorry for the poor punctuation I'm using a verbal dictation for my computer as my hands Have gotten so bad in just a year. And apparently my computer does not understand Texan LOL

[Loopydroopy]

Thank you all for the support. I'm feeling soooi bad today. Very sick to my stomach and dizzy. I've got to go back to work tmrw. Here's hoping I feel better by in the morning.

[Hidden in reply to Loopydroopy]

Sounds very Sjogren's-like to me as I have Sjogren's as my main disease and my gums, lips and tongue sometimes get very painful and I have lost most of my sense of taste from poor quality saliva and reflux. This loss of taste is part of Sjogren's for many. I also have hyperacusis (extreme sensitivity to certain sounds/ loud noises) and severe high pitched tinnitus with bouts of vertigo and disequillibrium/ poor balance and visual disturbances - plus plenty of tendinitis, bilateral joint pain, Raynauds and nerve pain everywhere.

But these connective diseases can all overlap. Hope you feel better by tomorrow.

[lupie46]

I have that. Mine has been diagnosed as geographic tongue. Google it. My sister has something similar called lichen planus. You may need a trip to oral and facial at your local hospital. Ask your GP. Good luck.

[Fennella02]

Hi Loopydroopy . For me, no noticeable hearing loss but recurrent ear inflammation that isn't related to colds/viruses etc but has on occasion resulted in burst ear drums. My tongue is currently very sore and can be caused by Lupus/Sjogrens (as I found out at last week's rheumatology appt). It can also be caused by low iron & low B12 - these last 2 causes are comparatively easy to resolve with the right supplements. Take care. Clare x

[Loopydroopy]

Thanks guys, very helpful. I may need to go ahead and see rhumy now instead of end of Jan.

[hootie26]

As for me, no to the hearing loss, but yes to oral issues. Usually around the gums on inside of mouth. I think a few years back I had some tongue sores or splotches

[Author_ink]

I haven't had any hearing loss. But I do get small blisters on my tongue during lupus flare ups. My taste buds have changed. I don't have much of an appetite. My food taste like medicine sometimes. I can only eat small amounts of food.

Stay strong and get in touch with your Rumetologist if you have questions or concerns.

[Loopydroopy]

How have you guys treated the oral issues?