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@cmtg

I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did't make myself clear to you.

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Replies to "I have all the symptoms above you described except never had a lip biopsy, Dr said..."

I am sorry to hear about your tooth involvement. I have my teeth checked and cleaned every 6 months. On their recommendation, I use Phillips fluoride toothpaste once a day. Also use Biotene gel. Have used an electric toothbrush for years. There are also several chews OTC that you can use as often as you need them. A pharmacist can point you to them. Sounds like you need a new doctor.

Thanks Marylou and yes, I finally fired him last year. I put way too much trust in him. I see a dental specialist at Mayo next month and I hope they can do something for me.

My nausia is so bad I take zofran once or twice a day depending on how bad my nausia is because I was throwing up 6 to 8 times a day if you read my post tho im also having liver and pancriatic bile duct problems thay I think are due to sjogrens syndrome so that may account for my throwing up not sure but yes I have a lot of nausia

I find it so hard to accept the time it takes doctors to determine disease. What are they teaching in dr school. I have had so many hard to stand tests with promise that after THIS test we will have a determination. They never do. I must have a new disease or need new doctors.

@oregongirl It is frustrating I know Dr.s out hear listen to me but really don't do much to help Pain Dr.inj.back but it only last for awhile I need something to help daily but nothing has helped I can't believe the wealthiest country in the world and all they think no of is exploring space why can't they explore the human body and come up with results I am suppose to go to sons for pool party today but I feel like crap Other countries take care of finding cures ,don't understand it .

It's absolutely SAD and PATHETIC, that the UNITED STATES, has the means to solve problems and help those in NEED; but our GOVERNMENT doesn't seem to CARE! I frankly feel CHEATED, EMBARRASSED, and AFRAID, to be in our Country! I'd prefer living in a Country where EVERYONE SOLVES PROBLEMS TOGETHER, and actually CARES about the CONSTITUENTS to WHOM they SERVE!!!!!

Hello @rachelanne, welcome to Connect where we the people - patients and volunteers are part of the solution not the problem. We share our health stories, ask questions and learn from others with similar health problems. I came here in search of answers for my idiopathic small fiber peripheral neuropathy and other health issues. One of the things I have learned is that I need to be my own advocate and learn as much as I can about my own health history and background so that I can ask better questions and communicate better with my doctors. Hopefully through better communication comes better treatment.

@rachelanne are you able to share what brought you to Connect? Whatever it is, I'm glad you found us and I'm hoping you will find some answers here.

John

Don’t have the lip biopsy if you don’t need to. It’s painful