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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