Burning sore tongue and throat for a ... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Burning sore tongue and throat for a year getting worse driving me to despair

babyinny profile image

I have recently tested positive for Crest Syndrome awaiting rheumatology appointment I have been attending dental hospital were they diagnosed burning mouth syndrome but more recently have had positive blood test and have read this symptom could be connected please help with advice Thanks

10 Replies

I asked to be referred to ENT (ear nose and throat). Very helpful.

babyinny profile image
babyinny in reply to zenabb

Thank you so much for your kind response zenabb I have already been there and was left to dental hospital they prescribe lipoic acid which has really helped ,they also suggested nortriptaline which I can't tolerate unfortunately.I do enjoy your responses you are so positive keep them coming you are an inspiration take care Kathy

babyinny profile image
babyinny in reply to babyinny

sorry lipoic acid hasn't helped I should have said

zenabb profile image
zenabb in reply to babyinny

Thank you, Kathy

Hi babyinny my mouths a nightmare burning tongue I went to a ENT didn't know what I had till I went to a rheumatology dr Middleton brilliant doctor he said do you get dry eyes I said my mouths always painful I lost most of my teeth he put me on pilocarpine and lansoprazole always hiccuping when eating he said not going down properly in your esophagus I always have to drink water to moist me mouth always dry he said it was my raynauds what's doing it good luck to you Hun x

babyinny profile image
babyinny in reply to Frances18

Thanks Frances for your response its an awful thing is it crest you have ?. I have just had positive blood test for crest antibodies discovered at dental hospital after investigations for a lump on my gum .I am awating op to have lump removed and I also have a slack tooth to be removed. I am worried sick wait to see rheumatologist but more symptoms are appearing very quickly. I don't suffer from white or stiff fingers but have noticed my skin on fingers palm side have gotten very deep wrinkles on them and my finger tips are very soft almost go flat when pressed.I am also getting very itchy all over particularly scalp. Take care Kathy x

Frances18 profile image
Frances18 in reply to babyinny

Hi babyinny I must have burning mouth syndrome it drives me potty just want to pull me tongue out hope you go on ok x

babyinny profile image
babyinny in reply to Frances18

yes Francis me too its dreadful take care

Metronidazole is what you want to be prescribed. It's actually for the condition. It's crazy that your Dr's and dental hospital didn't automatically prescribe it.

[While I was taking this (for different issues/dental problems I was having) I also had ZERO EM flares for the full 5 days - first time ever since I got EM]

I even emailed the TEA website reporting the effects these meds had on my EM, and they were very interested and said they'd pass on the info to the propper organisations???? as they're not medically trained and thought it worth investigating more, with treating EM patients and not solely aimed towards those with Burning Mouth Syndrome.

babyinny profile image
babyinny in reply to X-Woman

x-woman thanks so much for your reply I will certainly speak to my gp but she is reluctant to prescribe any medication at the moment until I have seen rheumatologist so I must suffer awaiting an appointment which makes no sense take care

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