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Burning Mouth Syndrome. I have it very severe.

Skin Health | Last Active: Dec 28, 2024 | Replies (585)

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@rgpadilla

Has anyone, even if it is one, that had gone to either the Mayo Clinic in Phoenix or Rochester for this BMS problem, burning tongue, been cured?
Any one?

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Replies to "Has anyone, even if it is one, that had gone to either the Mayo Clinic in..."

There is not a cure. The dr's can't even agree if the dentist, neurologist or primary doctor should take care of it. BMS has been in my life since 1994. I went to Mayo clinic way back then and they said I needed to see a psychiatrist, now they say "We know more than anyone."
The only thing that has helped me is to take a small dose of potassium chloride, 1/4 of a tablet RX. You can take too much of it so don't increase. Other than that I have tried many many things and I would not allow any dr or researcher to experiment on me. Never! It hard to say but there are only things that may help, many things that can hurt you, so it's up to you to find your own thing that helps your BMS.

Do you have to have a prescription for potassium chloride ?

Yes. There is an otc potassium pill but I can’t speak to the efficacy to that. I’m on lasix and I need it as a supplement to the diuretic. Talk to you dr because you can take too much. So don’t do it on your own. I can’t imagine a doctor would refuse such a low dose as 1/4 tab, but it’s not a drug you play with. It’s a drug that can affect the electric current of your heart. That’s why I say talk to your dr.

@phyllisrn, I just saw your post and I saw that you said you went to Mayo in 1994. Have you been seen by anyone at Mayo, or anywhere since then? Do you know if there have been any advancements in treatment since then? Rosemary

Yes I haven seen by other drs yes at Mayo and tested soooomuch and acupuncture, but please see my recent post from 2 min ago.

Hi, @rgpadilla.
Here is information about burning mouth syndrome care at Mayo Clinic and Mayo Clinic Health System, including expertise and ranking https://www.mayoclinic.org/diseases-conditions/burning-mouth-syndrome/care-at-mayo-clinic/mac-20350921

Beyond the 3 main campuses, you may also consider the dermatology department in the Mayo Clinic Health System, Autin MN.

To find out more about Mayo Clinic's experience and expertise in treating burning mouth syndrome, please contact the appointment office at the location of your preference http://mayocl.in/1mtmR63. They can help direct your query to the right person.

You can find more information about billing and insurance here: http://www.mayoclinic.org/patient-visitor-guide/minnesota/billing-insurance and on this webpage http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance. If you have further questions, please contact the business office at Mayo Clinic’s Patient Account Services at 800-660-4582.

Have you researched the medication Gabapention. Works for me I've had BMS for five years
Very dibilitating Trading one lesser evil for another. I'm on very high dosages. But my mouth feels wonderful I have dentures
That's what started me down this horrible nightmare I lost over fifty pounds I was wearing a size 18 when I first got my dentures. Now I'm in a size 6. I'm 5 ft 8in weigh 140lb Again do your research on this medication it's certainly not for everyone Talk to your Doctor or dentist about it. I also use a lot of honey. You can put it in peppermint tea. Sometimes I just pour it on my tongue and lips. It nutrilizes the burning for a few minutes
Hope this helps
I truly know your pain