Erosive oral lichen planus
Hello
I'm new to the group. I was diagnosed with erosive lichen planus 4 years ago and it has been a nightmare since. Mine has progressed from my mouth to my esophagus, nose and eyes. I've seen so many doctors @ Vanderbilt and St Thomas Hospital who have no idea how to treat my illness. I've. Even advised to go to the Mayo Clinic in Rochester but I'm really not sure what doctor or doctors have experience with treating this disease. Any help would be appreciated
Thanks
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@mrsdavis1 Whoa! You’ve had some big decisions to make! Yes, just more time is needed. Is your son doing well? Just take your notes and go to the dermatologist. Explain the story to her/him, write everything down, find out if there’s a specialist you could/should see and take charge of your health! You seem like someone who can do this! Best of luck! Becky
My son was born with PFFD (Proximal Femoral Focal Deficiency) which is now referred to as CFD (Congenital Femoral Deficiency). He had reconstructive hip and knee surgery along with a pelvic osteotomy at 4. He’ll be 10 this month but we’re getting him prepared for staging to remove his hardware (6 titanium screws) before surgery number 3 of 6 remaining. He’s a special little guy and he’s strong. He wears a non-standard prosthetic leg now but when everything’s all over he’ll walk on both of his natural feet. As for me, I’m going to go to the dermatologist but I won’t be too quick to let them cut anything off of me.
@mrsdavis1 YOU ARE ONE STRONG WOMAN! WOW!
Yes. Was diagnosed with bms 4 months ago. Throat has been burning ever since. Started with sores, lesions, pain ever since. Been to dentist, 2 ENTs, gp. They have all dismissed me. Pain is unbearable. Going to a oral surgeon tomorrow. Hopefully will get some answers. Swallowing and throat issues started 7 months ago. Had GI work up at Mayo. Dr claimed it was esophageal hypersensitivity which dosen't explain the sores, ulcers, etc.
Also had all the auto immune tests done that came back neg. Just want this pain to stop. Has created depression/anxiety which only aggravates it even more
I contacted Mayo went the bms started. Was told there was a 8 month wait to get in
I think mine has progressed to esophagus. What kind of dr is going to to test your esophagus
Sorry you are going through so much. I am new to this group but wanted to let you know my experience with the Rx compounds. Walgreens wanted $200 for a small bottle. I ended up taking it to a lsmall local pharmacy and the price was 75% .
Hello-I can hear the pain in your words and feel so badly that you are not being heard by doctors. I was diagnosed with oral and vaginal about 6 months ago. My dentist initially mentioned it and referred me to a periodontist in order to try to bring my gums to health. He did the biopsy for diagnosis and then referred me to a dermatologist who is a specialist in LP. (My gyno. said there was no sign of LP down there, but the specialist said, yes in fact it is there as well). I am using clobetesol gel orally 4x week at this point; originally it was every night plus minocycline. I also use a gel vaginally and I swish with an anti-rejection medication 4x week as well. I have seen some difference in my mouth-the extreme redness seems better-I am trying to figure out what foods or liquids affect my mouth. My tongue often feels as if it has been scraped. Stress is supposed to bring it on and I am stressed at the possibility of oral cancer developing as I have had two areas on my body with squamous cell carcinoma removed in the past. I am insulted by the "geriatric" reference! You are so young and with four children-so very busy! I hope you find relief soon.
Good morning all. @deb1956 and @mrsdavis1 Welcome to Connect. Everyone here is a volunteer and we try to help each other through our own experiences. But we are not doctors, so cannot prescribe medications. I’m going to ask @emal2 and @microgirl and @jshdma and @artist01 if they could share their experiences with you. While we wait for them, can you tell me what you have done so far to care for the oral lichen planus?