uveitis and temporomandibular jaw disorder

[magician]

hello! Uveitis since 2008, well controlled using Humira

posting today as a matter of curious interest, a very unscientific info gathering regarding: incidence of uveitis with temporomandibular jaw disorder as comorbidity.

was in ophthalmologist yesterday, mentioned for the nth time my endless headaches( which were always ignored for the past 20 years or so). I added that it might be also attributable to my problems with jaw.

surprise - ophthalmologist reacted - he said he knows quite a number of cases of children with uveitis, at the same time suffering from temporomandibular jaw disorder. He qualified this observation by adding that the said children have idiopathic uveitis, unlike mine which is BD related (and of course I am no spring chicken at age 63).

thanks and happy summer to all!

🌻

[012703060610]

I have both Behcet's as well as Relapsing Polychondritis. TMJ is a huge issue for me. Uveitis occurs in both diseases as well. I have been told though my TMJ is related to hyper mobility issues (ehler danlos syndrome) versus the other two. Honestly, I try to follow my Rheumtologists advice.....we can't put a name to everything. I have other markers for other autoimmune diseases but they haven't presented....I guess yet! When I have a massive TMJ flare, I do put warm compress on my jaw and lay down. Seems to help a bit instead of just using medications.

[magician in reply to 012703060610]

Hello, 012703060610!

Thanks for taking the time to respond. How was your TMJ disorder diagnosed? The ophthalmologist said that there is a particular ultrasound procedure for checking on it - he said he would inquire and give me a reference

TMJ is also a huge issue for me, to the extent that I often cannot have proper meals. Even peanut butter can give me a TMJ pain.

I do not have any medication for TMJ. I have too many diverse pains here and there. If I take meds for every pain, I am afraid I will become dependent on them or end up with toxic doses. Plus they come and go in their own, sometimes in a matter of minutes. My doctors always offer pain meds though.

I am managing my TMJ issue by avoiding “tough” foods.

I probably have markers for other diseases too, just so exasperated and frustrated to go from one specialist to another. ..

Thanks again and enjoy the summer!

[012703060610 in reply to magician]

For me it's all pretty clinical data points. I get lock jaw frequently, my jaw floats and moves (changing my dental bite). My dentist diagnosed it and then Rheumatoglist reaffirmed. I have connective tissue disorder and TMJ is pretty standard unfortunately. I also have arthritic issues that trickle into my jaw too. Nothing I can do will change except take my Rheumatoid meds which one is a weekly injection. I can't ever anticipate flares, but they are generally just stress induced.

[magician in reply to 012703060610]

my dental bite changes too - I need to wear mouth guard for bruxism. If I wear it 2 consecutive nights, it gets very loose. If I wear it every other night it gets very tight and lopsided. When I wake I up the following morning, it is even and comfortable.

Your response jolts my memory - back in 2008, my diagnosis was a toss up between BD (incomplete) or connective tissue disorder. Somehow the doctors always referred to my disease as BD, though the “toss up’ was never really further investigated.

I do have arthritis of the knees.

I’ll let you know what comes up with the ultrasound - ophthalmologist will give me referral in October, and I will possibly get an appointment by January. Medical appointments take unbelievably long to secure over here…

Thanks!

[012703060610]

So a lot of what I read about Behcet's is that it is usually the first autoimmune to pop up and then others follow. I managed it without real care through my 20s and 30s. I dealt with the sores, albeit painful and sometimes the size of a quarter. Then when all these other health issues kicked off and I had a huge marker for autoimmune issue, people finally took me seriously. Three Rheumatologists scolded me and said my ethnicity wouldn't qualify me of BD. I eventually made it to NYU and Brigham and women's for initial diagnosis. I'm so sorry you have to wait THAT long to get an appointment. That jut seems nuts. Out of curiosity, do you get sores other places. My shins are filled with open wounds that no one can figure out what to do with. I keep bringing it up, even though they don't hurt or itch, but they don't heal. I treat them every day with hydrogen peroxide and Neosporin and literally no change. The just won't heal. When walking too far, they start to explode. I haven't been able to put shorts or a dress on in two years. It stinks!

[magician in reply to 012703060610]

I suffered from humongous sores (up to cm) in calf, knees and ankles during my younger years. Initially treated with steroids and UV but only ended up with moon face from steroids.

Like yours - not itchy and not really painful but would last for months (maybe years, can’t exactly remember). They would pop up and disappear with no rhyme nor treatment. I did improvise and held something hot near the sores, hoping the heat would heal them. The sores disappeared eventually. Cannot say if it was due to the heat or just my body got smarter than the sores.

Totally relating to frustration over skirts and shorts. I hope you find a solution.

My sores occurred in my younger years, when girls did not wear pants yet (or may be they did but not in the boondocks where I lived). Besides, school uniform was dress, not pants. I just had to grin and bear the stares. One memory that comes to mind every now and then: I had humongous sore in my knee; had to stand in front of red traffic light; a man lowered himself in front of me and looked closely at my wounded knee…

no genital sores - hence they classify my case as incomplete BD

I am now in my 60’s and looking back, I have come to conclude with no scientific basis that I have had BD/connective issue/immune problems since childhood. Our narratives have similarities though there are differences in the sequence.

Yes, waiting time for appointment is very frustrating. I need to learn to schedule my symptoms, haha.

[012703060610 in reply to magician]

Oh man, you've been through the wringer! Feel the same, I was always sickly as a kid. When everyone would catch a virus, I would end up in the hospital. Keep me posted if you wish a you get to the doctor. I can imagine the day when skirts and dresses were it. My Mom was a teacher and as soon as a belly showed for pregnancy, they sent them on leave! By the time I came along it had just changed. LIFE!

[magician in reply to 012703060610]

and you’ve been through the wringer as well!

I feel bad for your situation yet at the same time it is sort of comforting to be able to have a conversation with someone who can relate.

I usually find myself saying insincerely/automatically that I am fine - simply out of a desire to avoid having to “balance ‘ out the conversation. If I simplify and say I have eye problem, I do not want it shrugged off as “what’s wrong with you -get some eye drops. Stop moaning, Fini”. Yet I do not want to have to go to the extent of saying that I almost lost my vision, my meds are super strong, etc.

I guess one can never really understand until we wear the other person’s shoes…

SMALL MIRACLE: Ophthalmologist sent me today (instead of waiting for next consultation in October) the name of specialist who might be able to help with my TMJ disorder.

Good things still happen!!

all the best,

😄

[012703060610 in reply to magician]

TOTAL MIRACLE!!!!