Sjogren's symptoms

[SandraBurgos]

Hi, I was diagnosed with Sjogren's by an oral surgeon who found I had an enlarged pariod gland. Blood tests did not confirm. All symptoms are present dryness of all the areas, swelling on hands between the pointer and thumb, swollen ankles, recently suffered with pain on the bridge of my nose hurt to touch, etc. Currently on of the main issues is the loss of hearing. I was diagnosed with hearing loss in my right ear a few years ago but not my left ear is being affected. I went to see an audiologist today for a free consultation and before I can obtain hearing aids the audiologist states I should see an ENT to see if there are any surgeries available for air bone gap and the ear fullness/pain symptons I've been experiencing. The hardest part of all this is I have no insurance and trying to get to the source of the condition. Your thoughts and suggestions are welcomed.

[Okebro]

Hi, I wish I had more insight for you and I really hope someone on here can give you more guidance. I don't have a lot of experience with what your going through. I do have ear discomfort and my optometrist has told me I need to get to a rheumatologist. I would expect if your docs think you have Sjogrens a rheumatologist is always a useful doc to see.

Best of luck x

[Space99 in reply to Okebro]

@+ Okebro ...trying to make contact to go for coffee January 2017

[weathervane]

I agree with Okebro a rheumatolgist is your next step. It can take a while to get a diagnosis, good luck🌻

[wsmith]

Hi, I am new to SS and have the same symptoms as you. I lost some of my hearing in my right ear years ago but my left ear is still ok. I have only realised reading your post that it may be related to SS. Sadly I don't have an answer for you and keen to see what others say but wanted to ask a question. Did you have excruciating noise in the ear before losing the hearing? Mine started off with a loud low noise then would slowly increase to a loud high pitched noise? I tried to explain the the ENT person but they just looked at me blankly.

[weathervane in reply to wsmith]

I had a hearing test about 3 years ago before i found i had sjogren, i was told i have cookie bite hearing loss. I have difficulty following conversations if i am in a restaurant or if alot of people are talking. I need to get assessed again as it is getting worse and have mild tiinnitus. Following these posts i am wondering if this is another symptom of sjogrens?? Its the gift that keeps on giving🙄🙄

[Hidden]

I have navigated this tricky path too! Sadly we tend to fall between the stools in our highly specialised medical establishment. One can see how it is not in a consultant's interests to step outside the boundaries of his/her area and risk treading on the toes of colleagues! My ear pain was caused by a mega build-up of wax. Once I had that cleared with olive oil and something like a tiny vacuum cleaner the audiologist diagnosed neurological hearing loss - discrimination. As my then job involved meetings and people talking not being able to make out what someone was saying did attract a lot of puzzled looks... Similarly my Reumy finally labelled it Sjogren's but without the usual diagnostic markers as 'secondary' or 'neurological'. Still I get the various lubricants on prescription and so can take care of my eyes and teeth/gums. This is now a minor aspect as not breathing enough automatically and having seizures is rather more urgent...