New Symptoms with my Oral Lichen Planus
Posted , 4 users are following.
I've had OLP since about 2008. That is when I started having sores and only about 3 years ago finally had someone diagnose me and learning to live with it by knowing what not to eat ( spicy foods and anything with mint) Brushing my teeth was the worst so finding Tom's of Maine toothpaste with Fennel was a major deal for me because I was finally able to brush my teeth without tears running down my face from the burning pain.
However, the reason for opening this discussion was to ask if anyone else has an involuntary jaw movement with OLP?
A year ago I developed a huge mouth infection on all my OLP sores in my mouth that knocked me out for 3 weeks. I ran a very high fever and was unable to swallow anything even saliva and when I tried to drink just water, it felt like I had glass in my mouth. Since then, I have sores running along the sides of tongue but what is more concerning is a involuntary jaw twitch. It's not constant and more in the morning so but wondering if it's normal with OLP and common if say my mouth is dry from sleeping?
It's painful when it happens and every time it does happens, it feels like my sores I have in the back of my mouth behind lower molars get ripped open every time because with having OLP for so many years, I have lost the ability to open my mouth wide. (for example, opening mouth to eat a burger is difficult). Dentist have said it's due to scar tissue buildup.
My main concern is it's involuntary jaw movement and should that be concerning or part of having OLP?
Thanks for your time,
Carolyn
0 likes, 6 replies
Sista882000 ckitefly
Posted
Sorry you are suffering so. Who is treating you, and diagnosed you. I found help after a few years of Primary care, dentist, ENT specialist who referred me to oral medicine department in big hospital. They put me on dexamethasone oral rinse 3 times a day for 4 weeks, dramatic improvement. Now same for flareups only, so farsogood. Hope you are getting good treatment. I feel that is the only thing that will help. Good luck ~ SIS
sandy58862 Sista882000
Posted
THE RIGHT SIDE OF MY JAW CONTINUES TO BE SORE IN ADDITION TO HEADACHES ON RIGHT SIDE . STEMS FROM MAJOR FLARE @ back molar.
CONTINUING W DEXAMETHAZONE. MAJOR HELP IS CELLCEPT. HAS KEPT THE SORES UNDER CONTROL. APPRECIATE YOUR COMMENTS.
Sista882000 sandy58862
Posted
i dont have headpain or movement, just ulcers inside cheeks and tongue. Never heard of cellcept , but good to know theee is more help out there
ckitefly Sista882000
Posted
I do have an ENT that helped with the infection and also at that same time, took a biopsy to rule out cancer which as negative and a relief. I have a mouth wash which is a mix of several medications to use only when flare ups. It's the involuntary jaw jerking that is concerning me now and not sure if it could be the OLP. Primary doctor sending me to neurologust due to fainting spells so maybe jaw is not related to OLP but thinking since jaw, it could be.
I'm a mystery 😦
ckitefly sandy58862
Posted
Cellcept is an interesting medication when reading up on it. Whom may I asked prescribed it? ENT or primary doctor? I will inquire about it.
sandy58862 ckitefly
Posted
CHOSE A DERMATOLOGIST TO MANAGE THIS CONDITION. FOLLOWED THE RECOMMENDATIONS OF THE WOMEN ON THIS SITE. SIMPLY GET A BIOPSY IMMEDIATELY UPON A FLARE & a patholgy report from an oral surgeon. ENT DOCS AREN't doing biopsy's here anymore.
THESE DOCS RAN ME IN CIRCLES for 9 months..
INFECTIOUS DISEASE
DERMATOLOGIST 1
RHEUMATOLOGIST
SURGICAL ONCOLOGIST
DERMATOLOGIst 2
ORAL SURGEON
ENT
SELECTED A DERM WILLING TO study & figure it out.
STARTED W LEAST POTENT DRUGS & escalated until manageable. MONITOR REGULATLY. HOPE IS TO KEEEP IT MANAGED W/o escalating drugs & reducing.
PLEASE SHARE NEW FINDINGS.