Theresa,
Hope you are doing well.

I take 300 MG of Neurontin three times a day. Two years ago when I didn't have the symptoms of cardiac amyloidosis and I was going from doctor to doctor trying to get help for the burning mouth I was told by one doctor that I had to learn to live with it and another doctor said it was easier to win the lottery than to get rid of the BMS. How painful when no hope is given. Yet it was so wonderful when my neurologist gave me the Neurontin and it slowly worked. Whenever i skip two dosages I can feel a difference.Let me know how you feel when you start drinking it again.

By the way, I have a dear friend who was my hematologist for years. Unfortunately, she moved to Colorado where she is currently practicing. The other day she was taking a course in "Cardio-Oncology". She says that for one half day they only discussed amyloidosis. They are being able to diagnose it much sooner now.

Take care Theresa and may Heavenly Father-Mother bless you.

I will let you know how it’s going Jenny. I take 100 mg 3x a day.

At the beginning I was treated the same way. They had no idea what to suggest. I had to find out everything on my own.

Again, I have a feeling this is going to become more prevalent and doctors are going to become more educated about amyloidosis.

God bless you and all of us as well.

Jenny thank you so much! I just recently took myself off the med I was on. I didn’t think it was doing much. I hate that I’m taking all these pills. Well my mouth pain and taste started to get worse again. I took myself off Gabapentin which is really neurontin. Well I went back on the Gabapentin after reading your post! Hopefully it does the trick. I thought it was just supposed to help with the neuropathy in my feet. That’s a pain I can live with. Jenny by the way how many mgs do you take of the neurontin?

Dear MargaretWood. After seeing lots of doctors about the horrible sensation of having my mouth burning it was a neurologist who gave me neurontin and helped me feel better. I take it religiously everyday . I also use Biotin toothpaste and Biotin mouthwash for the dry mouth.

Yes and my lips constantly peel because of the burning, also get a very dry mouth, agree that I can still smell amazing things but they never taste any good. Only tastes I can identify are orange vegetables (pumpkin, carrots), salt and sugar.