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Burning mouth syndrome anyone??

PostPosted: September 28th, 2015, 11:52 am
by sanje77
Hello, has anyone experienced a sore and burning tongue along with BFS?
I'm having a particularly miserable time with all my issues (constant twitching, sore ankle/thumb joint, even palm atrophy etc) at the moment. It's been a year and no improvement in sight :-(
I've managed to successfully ignore a lot of it for a while, however I've been dealing with a constant sore and burning tongue/hard palette for several months now, which is just getting worse and worse. It's very uncomfortable, really hard to ignore and is starting to affect my quality of life. To me it seems to be connected to my other problems, I just can't imagine everything being of separate origin. It seems all nerve related after all..
Anyone out there with similar experiences?

Thanks for reading,
Sanje

Re: Burning mouth syndrome anyone??

PostPosted: September 28th, 2015, 12:47 pm
by Bibi
I have a very unconfortable burning in my tounge . My twitches started in april 2014 and The burning started in november. I also have a feeling off liquids going up in my nose When drinking and a " gurgling " Sound in throath. Wednesday i am going to have a gastroskopi because i also have heartburn even that i eat omeprazole ( for acid ) for 1 1/2 months now .

Re: Burning mouth syndrome anyone??

PostPosted: September 28th, 2015, 2:25 pm
by sanje77
Hi Bibi,
thank you for replying. That sounds very uncomfortable, let's hope the gastroscopy reveals something that's easily treatable. I've had one myself recently, but nothing unusual showed. But I don't have any issues like heartburn, though I have had an occasional lump in throat feeling. I have been told that reflux can cause burning mouth syndrome, so maybe that is the case for you. I do wonder though whether BFS and the burning tongue sensation are related. I started twitching in September 2014 and the tongue issues started around March this year. It's so uncomfortable and making me very miserable. I wish you luck, please let me know if you find something that helps you.

Re: Burning mouth syndrome anyone??

PostPosted: September 28th, 2015, 3:47 pm
by Scboy
I get the burning tongue along with burning in my legs. In my case they are related to the twitching. Perhaps you have certain food sensitivities. I know dairy makes mine much worse.

Re: Burning mouth syndrome anyone??

PostPosted: September 28th, 2015, 4:54 pm
by sanje77
Hmmm, I just can't imagine it's food sensitivities.. I've never had any and been a big cheese eater my whole life. Always healthy and robust. The tongue burning/soreness started along with all my other nerve issues, so I do think it's related. but who knows, it's just a theory...

Re: Burning mouth syndrome anyone??

PostPosted: September 28th, 2015, 6:00 pm
by misterjuanperalta
I experience that and may be a form of generalized neuropathy that should be investigated.

Re: Burning mouth syndrome anyone??

PostPosted: September 29th, 2015, 1:13 pm
by sanje77
yes, those were my thoughts... thanks for your input. How long have you had it and tyre there investigations going on?
I have my next neuro check-up in a month, let's see what that reveals...

Re: Burning mouth syndrome anyone??

PostPosted: September 29th, 2015, 3:37 pm
by Scboy
I have mild small fiber neuropathy confirmed by skin biopsy. The million dollar question is what is causing the neuropathy. They haven't been able to find a cause unfortunately. The mouth pain is the worst though. Very painful. Luckily mine got better with some diet modifications. Not 100% but better.

Re: Burning mouth syndrome anyone??

PostPosted: September 29th, 2015, 6:26 pm
by misterjuanperalta
Idiopathic neuropathy is often caused by Metabolic Syndrome and/or poor sugar and insulin metabolism.

Source: http://www.ncbi.nlm.nih.gov/pubmed/16448668
Source: http://www.ncbi.nlm.nih.gov/pubmed/18606421

Re: Burning mouth syndrome anyone??

PostPosted: September 30th, 2015, 3:45 pm
by Bibi
Today i had a gastroskopi and they Found that i have a hiatus Hernie and a very irritaded stomach . I have to keep eating pantoprazole for a long time and adjust my food so Ivan feel better. I am happy that they Found a reason for my truble in stomach and throath , but i am also a little worried aboutbthe hiatus Hernie because it is a weak muscle between stomach and osephagus .

Re: Burning mouth syndrome anyone??

PostPosted: September 30th, 2015, 4:41 pm
by leaflea
Hi Bibi,

Nice to see you. Are you still on the FB site?

Prior to bfs I had a lot of pain following a teeth cleaning. It was so unsual. Thought perhaps the tool and introduced an infection in my mouth. Also, prior to bfs, I had "black hairy tongue." Gross!!! Right? I know. It was caused by a tooth whitening mouthwash I was using. Unusual.

I've also had the issues with acid reflux and swallowing, gurgling. It is all down to bfs if you ask me. I've had esophageal spasms, too. Gladly, all has calmed down considerably since about last Spring - about 18 or 20 months in. All started about exactly two years ago now.

Cheers!
Leanne

Re: Burning mouth syndrome anyone??

PostPosted: September 30th, 2015, 10:30 pm
by Yuliasir
Bibi
please do not worry :) Muscles in the GIT are of different type compared to skeletsl and have nothing common with the motor neurons diseases, and their weakness is rather related to lack of collagen than to any denervation etc.

Re: Burning mouth syndrome anyone??

PostPosted: October 1st, 2015, 10:58 am
by Bibi
Hi Leanne and yulia !

Nice too see You too ! I am still on FB but dont post much. I have had a really hard time with The stomach and throath issues , somedays i feel that i have acid in my nose . I also have to Blow my nose after eating and feel Wet in on corner off mouth. I have eaten omeprazole and pantoprazole for 6 weeks now but it dont help. But after The gastroskopi yesterday i at least know that there is a reason for some off The symptomes . I had The answer Right after The gastroskopi When i Was still bleeding out off my nose and Was a little " choked" after having a scope The Whole Way from nose too stomach. So i Was to confused to ask about medications and what to expect . I know that pantoprazole Will reduce acid but i Will still have The Hernie . I also wished that i have asked about The weak muscle , i Read that it is The diafragma which is weak and therfore theres is bad closure between osephagus and stomach.
And i still have lot off twitches and pain now in hip and legs after walking

Re: Burning mouth syndrome anyone??

PostPosted: October 1st, 2015, 10:25 pm
by Yuliasir
Bibi,
not weak but too flexy, most probbaly it happens due to aging of the muscles and some people (especially hypermobile ones) have muscles which tend to be extra elastic. That is why your stomach, which is normally placed in the abdomen, partially gets into the chest cavity - just because the muscles are extra flexy, like you have it made from soft rubber, not from harder one, and that's all.

in ALS, when it comes to weak diaphragm, denervated one, main trouble is not a reflux or piloric hernia, but oh, a breathing problems that is why they have to be put on ventilator. Piloric hernias, instead, are very very common, and no one of those people needs ventilator because of the hernia.

Re: Burning mouth syndrome anyone??

PostPosted: October 2nd, 2015, 12:47 pm
by Bibi
Yuliasir wrote:Bibi,
not weak but too flexy, most probbaly it happens due to aging of the muscles and some people (especially hypermobile ones) have muscles which tend to be extra elastic. That is why your stomach, which is normally placed in the abdomen, partially gets into the chest cavity - just because the muscles are extra flexy, like you have it made from soft rubber, not from harder one, and that's all.

in ALS, when it comes to weak diaphragm, denervated one, main trouble is not a reflux or piloric hernia, but oh, a breathing problems that is why they have to be put on ventilator. Piloric hernias, instead, are very very common, and no one of those people needs ventilator because of the hernia.


Thanks yulia :D You are so sweet , always responding and explaining !
I really feel that things are progressing , last Night i had The weirdest Night jerks , one arm , one feet then The other arm and feet , i also wake up , sweating and also sweat after eating. Today i asked my GP to refer me to another neuroclinic in a Big hospital.