Hi, honestly speaking, If you were to talk to any physician about this I will tell you they don't know. This is uncharted territory. My case is very rare according to research.
I'm thinking how I might be able to help you. I will tell you how it all began with me. I noticed some swallowing issues. Certain things I ate wouldn't go down well. I ignored it. I began to notice random red bumps appearing on my thighs. I brushed it off as too much sun exposure. I only had a handful of them. After some time I developed a yeast infection in my mouth. It wouldn't go away after using a few different medications. Then it spread into the corners of my mouth, yuck!
I was referred to a Gastroenterologist who insisted on looking into my esophagus. I was diagnosed with ELP. It was obvious I also had OLP and LP on my skin.
I live in a smaller town north of Seattle near the Canadian border. I'm incredibly fortunate to have an amazing Gastroenterologist. He is young and very knowledgeable. He sincerely cares about me.
He went to a big out of state convention on my behalf in hopes to meet another specialist with a patient like me. There was not one there. This is so rare.
I live 90 minutes from the University of Washington and all of the big research hospitals. There isn't a specialist in the area to recommend.
When swallowing gets really challenging for me my doctor will get me in quickly to try and stretch my esophagus a bit in the surgery center.
I wish you could see my doctor. I can't believe how fortunate I am to have him.
If he moved I would move to the same place. I would be frightened without him.
If you want to contact me via Email or something I'm happy to help you. Honestly, if you traveled to see my specialist you are welcome to stay at our house.
We live in the beautiful Pacific Northwest next to the saltwater and the Islands people travel miles to visit. We live in a little piece of heaven, Bellingham, WA.
Take care, I'm here for you ❤️