Burning tongue syndrome

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would like to know if anyone has a severe case of bms? Had it gone two yrs.it gets worse by the day.swollen tongue problems with talking, twenty four hrs of sensations along with burning..I chew gum 24 hrs a day.it helps a little with sensations . Has anyone been to Cleveland clinic, or john Hopkins? I live in Philadelphia exhaustedthe medical community here. Had no succes both medically or alternatively 

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  • Posted

    Hi Ruthann,

    My husband lost his sense of taste about 2 1/2 yrs ago due to a dental procedure. The medical community is useless. They either do not believe him or say he can'c lose his sense of taste without losing his sense of smell. Almost immediatley he also got a severe case of tinnitus and dysgeusa. He has tried Lorazapam which does not cure anything but seems to make things more tolerable. Another Dr. put him on Gabapentin which seemed to actually make things worse. He is now trying Clonazapam but so far no help at all. I wish you luck. Please let us know if you find any relief.

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    • Posted

      Been dealing with this for two yrs. I tried all the above that you mentioned,nothing work. Lost count of how many dresses I've seen. Useless. Burning is one aspect, but the sensation and swelling another. The problem is through my research some of the feelings don't seem to relate. To bms. As it gets worse I think the worst.

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  • Posted

    Hello.  My BMS began Feb 11th, 2016 and feel that I found the answer.  BMS was my first symptom and it was coupled quickly with other symptoms which all lasted me 9 months in full.   Anyhow, you most likely have Laryngopharyngeal Reflux (LPR) which is a SILENT acid reflux with no heartburn associated with it.  You most likely have a Lower Esophagus Sphnicter issue and a small hiatal hernia - acid is channeling out and causing your LES - lower esophagus sphnicter issue.  You are welcome to follow my progress on my facebook wall publically.  When did yours begin and how?  Mine stared immediately following a dentist appointment.  Do you have any known history of acid reflux?  
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    • Posted

      It stated 2 years ago. Ihad an ulser removed from my tongue. Life has been a nightmare ever since. I have never had acid reflux. I believe mine is a nurapathy of the tongue. The ent caused nerve damage when he removed the ulser.  You name it I tried it. chalodapin,nuratriptaline  gabapentin, lyrica. Low level laser, acupuncture,hypnosis. I am taking pramapecsol, it used for Parkinson's and restless leg syndrome? I don't think it works

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    • Posted

      My burning mouth or tongue has started in September 2016 ! After I finished breastfeeding. It gets worse by the afternoon and come down to the night. I'm going to see a Mouth Specialist on Monday! !! Very long waiting list if it's not a Cancer here in uk. I think to myself it's hormones related.

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    • Posted

      It is also possible it's fungal related. Thrush is a known and common fungal infection of the mouth. It's a type of candida the same kind of fungal infection we call a yeast infection. But there are other kinds of fungal infections we can get in the mouth that are not thrush and do not have the white splotches that thrush has. Sometimes a fungal infection of the mouth will leave no evidence whatsoever. I've just recently learned all this

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    • Posted

      Hi   I have tried anti-fungal treatment which did not help at all unfortunately. I finally persuaded my Consultant to give me a course of anti-viral medicine. He was not willing to offer me the blood tests to prove either shingles or herpes was causing the symptoms and he only gave me the lowest dose for a period of 21 days. However my 'BMS' improved considerably. The blisters and cracked tongue, sore throat etc. has eased and some days I hardly notice it. It has not gone completely and he would not consider further treatment so I have now been referred to a large London research and teaching facility. They may be more forthcoming with carrying out the required tests which, at the very least, will rule OUT the possible causes. I will keep you posted as to how it goes. I am not willing to just go away until all treatable medical conditions have been ruled out. 

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  • Posted

    I have seen recent research in Denver (Prof. Maria Nagler) that indicates HSV-1 (cold sore virus) and VZV-1 (Shingles virus) can be the cause of BMS. The presence of the virus, which does not cause any other outward symptoms e.g cold sores, can be identified with a simple saliva test and treated with Valtrex (acyclovir). They have had very good results with patients who are symptom and pain free one and a half years after treatment. I am currently trying to persuade my Consultant to try this route as nothing else has helped for ten months and I am not ready to simply learn to live with this miserable condition. This test is not one normally carried out for BMS and I believe that it should be!! 

    I am waiting to hear if our Health Trust will agree to the test and I shall be very unhappy if they decline as this could help so many people. I would be willing to try the anti-viral medication anyway. 

    Has anyone else undergone the test? If so what was the outcome and/or have you used anti-viral medication. If so, did they work, at what dosage and length of treatment?

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    • Posted

      I do have herpies simplex. I was put on vatrex, one script. It didn't take away bms. Maybe I wasn't on it long enough. Aside from the burning I get horrible sensation on my tongue and roof of my mouth. Sometimes it feels electricfied. Other times like dead jelly in mouth. Other times like raw meat. Do you experience any of that?

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    • Posted

      Yes, all of the above. Also deep cracks in my tongue and white blisters which then go into red sore areas. Now affecting my throat and cheeks and particulalry tip of tongue. I am currently taking Alpha Lipoic Acid and these do seem to help. You may be right about the treatment not being long enough. It seems from the research that the anti-virals are taken for at least three months. May be worth trying again? I will keep the Forum updated on any progress I make. Good Luck

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  • Posted

    Have just seen my consultant who has told me that they will not carry out the saliva test for the Herpes Virus, nor will he contact Professor Nagler in the States, as the consult will be charged to the NHS Trust. He had not looked at all the case studies I sent through where a high percentage of the group were pain free within ten days. I feel that BMS is viewed as an inconvenience and not as an extemely painful condition. He has not had one case where he has successfully treated and/or cured BMS, nor does he believe that any of the medicines or 'home cures' work and can only recommend Cognitive Behavioural Therapy. I think we are all aware that we need to keep busy and occupied when our mouths are particulalry bad!!  I have had Neuropathy (which seems to be the general opinion as to the cause of BMS) before and was given Amytriptyline which worked so have persuaded him to prescribe a six week course of that. If that does not work I shall push to have a course of anti-viral medications. I am not willing to 'learn to live with it' as I have been told to, before exhausting all options. Perhaps we need to put some pressure on our medical professionals to offer BMS sufferers tests that may offer a cure for this (non self inflicted) illness?? 

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    • Posted

      I suffer from lower back pain as well as BMS. And I deal with doctors that want to make you feel like the pain from lower back pain is also in my head and not in my back. So I am well aware of the ignorance of doctors treating pain as if it something we can control. It is very frustrating.
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