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nanettehathaway

Burning Mouth Syndrome or Neuropathic Burning Mouth Syndrome.

Posted by @nanettehathaway in Just Want to Talk, Sep 22, 2011

How many of you suffer with this disorder as I do? Very severe PAIN ALL DAY LONG. Do you have it too?

Tags: tongue, and throat

bobv

Posted by @bobv, Sep 28, 2011

Hello Nanette I am a sufferer of BMS and have been getting treatment at the Mayo, AZ. the doctors understands the syndrome, my pain has gone from extreme to moderate. There are many test to go through but this Dr. Yiannias is a miracle man. I have been trying several medicines, an nothing has cured it but it has taken the sting out of the mouth.

Nanette Hathaway likes this
nanettehathaway

Posted by @nanettehathaway, Oct 10, 2011

Hi Bob, sorry to take so long getting back with you. I've been quite ill., in extreme pain. My doctors took no tests to diagnose me. I looked in the computer and diagnosed myself with the CORRECT DIAGNOSIS, can you believe that. Since then I read my papers on BMS again, and noticed one small sentence, stating it gets misdiagnosed with Glossopharyngeal Neuralgia, so I invested the computer again, and looked it up. WOW! It had all my symptoms, which Burning Mouth Syndrome did not really have my correct symptoms, except I had such severe mouth, tongue, and throat pain, that I eventually became suicidal; I could not LIVE with that severe of pain in my mouth any longer. If you have a computer please look up GLOSSOPHARYNGEAL NEURALGIA, THE SYMPTOMS FOR IT IS SEVERE TONGUE, MOUTH AND THROAT all of which I had. I KNEW at that moment it was my true diagnos, and the Dr. who help write the article is in SEATTLE, YEA he's by my house, what a miricle. My Pain Dr. immediately ordered an MRI to see if I have a brain tumor and is referring me to Dr. Dugall in Seattle. I hope he knows all about it since he wrote the article; I have been ill with it since Dec.,2011. which is what made me eventually suicidal, my dumb doctors where I live in a small county, gave me nothing for my pain, and the several specialists I was referred to did not diagnose it, so I was in severe pain 8 mos. without a diagnosis or pain killers, to make a long story short; I've been thru Hell and back. I hope my letter helps you also with your mouth pain. PLEASE LOOK UP GLOSSOPHARYNGEAL NEURALGIA, you may have the same symptoms if you have a burning tongue. Must quit now, good luck to you. KEEP IN TOUCH, Nanette Hathaway, Mt. Vernon, Washington.

nanettehathaway

Posted by @nanettehathaway, Feb 28, 2012

LOOK AT MY NEW STATEMENT ABOVE. VERY IMPORTANT.

tiny

Posted by @tiny, Oct 28, 2011

Hello. My contact name is (Tiny). I have been suffering from BMS for three years now. I have spoken to many doctors of various medical fields to no avail. None have given me any diagnosis or recommendations as to how to relieve this horrible pain. I am desparate to find some relief. I have another appointment with an ENT on Monday and hopefully he can help me. By the way I also wrote to "The Doctors" on TV, but have not received a response. Thank you for listening.

nanettehathaway

Posted by @nanettehathaway, Oct 28, 2011

Tiny, I have been to many including an ENT who was so stupid he blaimed it on my degen. disc disease. I researched BMS, which I thought I had and learned that BMS is sometimes misdiagnosed with GLOSSOPHARYNGEAL NEURALGIA, which I am possitive I have. Symptoms are very severe burning of throat, larynx, tongue and voicebox. I even loose my voice sometimes. I have had it since Dec.,2010. What you and I need is a neurologist or NEURO-SURGEON. Surgery is the only way to correct it if medicines do not control it. In my case medicines do not work. I just rec'd a phone call from Univ. of Washington,Neurology, they are going to see me. If I am not pleased with them I am flying to the Skull Base Institutete in southern Calif. they do the surgery there. You can see the surgery performed live on their internet. If you can't find them let me know,I will help you. Go to Skull Base Institute on internet and click on Trigeminal Neuralgia,watch video!! Also access GLOSSOPHARYNGEAL NEURALGIA, Copy it and take to your doctor. I take gabapentin and hydromorphone or vicodine for pain, they don't help enough, I want the surgery. Hope I helped you. Nanette write again,but see neurologist or neuro-surgeon NOT ENT. Good Luck

sheetrock0131

Posted by @sheetrock0131, Apr 13, 2012

Hi Nanette,do you know if there are any reprocussions by having this surgery,should you have it.I'm interested.If it works for you,would please keep me in the loop.I'm desperate for help.18yrs is more than i can bear.There are more days i just can't get up from bed.I have become more unfunctional than ever.I'm 62yrs old,i can't see me living more older yrs with this...Good luck..

nanettehathaway

Posted by @nanettehathaway, Feb 28, 2012

LOOK AT MY NEW STATEMENT ABOVE DATED 2/28/12

sheetrock0131

Posted by @sheetrock0131, Apr 13, 2012

Hi Tiny,i also am an 18yr sufferer.I went the same route you are going through.I sent my story to Dr Oz ,i had someone film me.I have not had any responce.I have seen ENT,3 neurogilists,had accupuncture,been put on all kinds of meds,to no avail.I feel for you..

nanettehathaway

Posted by @nanettehathaway, Feb 28, 2012

Look at my new statement above.

nanettehathaway

Posted by @nanettehathaway, Feb 28, 2012

I'm back I've been diagnosed with BMS. A Pain Management clinic put me on hydromorphone, vicodin for my back, gamapentin 1200 mg a day for BMS and Baclofen for BMS,but dont know if Baclofen does anything, just read about it in an article. I chew sugarless gum Trident only all day and one piece in my mouth when I sleep. Must be sugarless Trident, it helps take the pain away. This answer is to ALL of you. I tried to get into Mayo Clinic in AZ., they REFUSED ME BECAUSE I WAS ON MEDICARE. MAYO CLINIC YOU SUCK. I found a specialist finally on the disease Dr. Joel Epstein. He seems very famous. Takes Medicare patients. He works out of Mt. Sinai Hospital, and flys to Chicago, Bellingham, Wa., by my house and Vancouver, Canada. In his article he lists all the medications and the correct doses to take to control or remove BMS. So, please look up his article and take it to your doctor and get on the medications. If you have a problem finding call me at 360-333-1771.PLEASE READ IT!!! IMPORTANT

sheetrock0131

Posted by @sheetrock0131, Apr 13, 2012

Hi Nanettte,i thought Mayo took patients without insurance.I have suffered with bms for 18yrs.I have been to Bostons finest,no one can help this condition.There is a surgeon at Tufts cranial facial clinic who talked to me about a shot in the tounge,but has serious consequences.My mpouth and cheek could stay numb forever.Cheek could sag.I might consider it.I don't care anymore,what i look like.I want a end to my pain.My depression and anxiety is overwhelming,i want to end my life...

laci80525

Posted by @laci80525, Mar 5, 2012

I just came back from the Mayo Clinic. Gave me a mouth wash, said to stay away from all caffeine,chocolate,popcorn, raw vegetables. The mouthwash numbs your mouth. I thought they could give some kind of a shot in my mouth and all this pain would go away. I was wrong. The Dermatologist in Rochester said she has 300 patients all over the country with this. Nobody I know has ever even heard of it.

sheetrock0131

Posted by @sheetrock0131, Apr 13, 2012

I have heard of the shot.I saw a surgeon who was willing to give me a shot.The problem is we could suffer permanent paralyass and a sagging cheek with no feeling.I am considering it,but remember what happens is permanent.

sheetrock0131

Posted by @sheetrock0131, Apr 13, 2012

I feel for you.I am an 18yr. sufferer.I have been to three neurogilists,oral specialist.I have depression along with anxiety over this condition.I have tried many medications,the only one that gives me temporary comfort is clonazapam.I had accupuncture as well.I'm considering Mayo Clinic.I live in the Boston area where we have the best Dr's ,unfortunatly no one has been able to help me.I have thought about ending my life,but i don't want to do that to my family whom i love deeply..i would love to hear from you.

missbret

Posted by @missbret, Jan 17, 2013

I too just woke up with this condition. I took all the tests…cat scan, blood work…and tried all the homeo remedies. Then my neurologist prescribed Lyrica and I have been (almost) pain free since the second day. It is expensive. About $1 per day. But you can order from SL tablets from Canada and split them. I just thank God I found the cure because I was ready to commit suicide if the condition turned out to be permanent. Hope this helps.

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