Ear/jaw issues and swollen lymph glands

[bathouse]

Hi all, I had the same issues last year when not diagnosed, now have the same again, now diagnosed APS

My right side jaw aches/feels odd, inner ear feels full, ear clear (ear clear last year) teeth fine.

My lymph glands are quite swollen in my Right armpit, GP has prescribed antibiotics, no change yet on day 3

Anyone else had similar?

Thanks in advance

Sue

[MaryF Administrator]

Hi, It might be a good idea if your GP also looked into Sjogrens Disease, it is not unusual to have this alongside Hughes Syndrome/APS. Mine was missed for a very long time. For me, I have had episodes of lymph nodes swelling in various parts of my body, but it mainly affects my saliva glands these days. MaryF

[bathouse in reply to MaryF]

Many thanks Mary, that is interesting, I have severe dry eyes that i have treatment for (FAB - where you put your own blood into your eyes) the test came back negative for Sjogrens, but I guess you cant always believe the blood tests.

Its all very odd, when you tell someone your symptoms you sound like a hypochondriac, APS really does affect so many things.

Many thanks for your advice

Regards

Sue x

[MaryF Administrator in reply to bathouse]

Often the trio of disease written about Prof Hughes is Hughes Syndrome/APS, Sjogrens and a Thyroid disorder. MaryF

[Lure2]

Do you have a Specialists for autoimmun illnesses today who is working daily with people like us and especially with APS of course? This is exstremely important to have for us with these tricky illnesses.

I know you have been speaking a lot about your GP. Earlier you told us that some Doctor thought you had MS. MS is often misdiagnosed and may in fact be APS.

It is very difficult to diagnose APS, SLE (Lupus), Sjögrens, Thyroidea-issues, RA etc and they often go hand in hand. Also the antibodies for Sjögrens for example may come much later or perhaps not ever. Have you done the Schirmer´s test for Sjögens?

[Lauren2121]

I often have deep inner ear pain that affects my jaw and neck, usually on one side. Triggered by cold. Pain is pretty severe at times. On the bad nights I’ll sleep with a hot water bottle on it and usually feel a lot of relief in the morning. I never knew this could be related to APS.

[bathouse]

Hello, yes, I am under Guys but my next appointment will be in August. I have had 2 positive blood tests now (after over 4 years of yelling GP I thought I had APS)

Guys have been lovely.

Yes had positive Schirmers test for my dry eyes, lovely ophthalmologist locally but me on the FAB trial which has helped.