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-   -   One of my 2 main pains caused by MS, Burning Mouth Syndrome. (https://www.neurotalk.org/multiple-sclerosis/155024-2-main-pains-caused-ms-burning-mouth-syndrome.html)

dmplaura 08-08-2011 05:26 PM

One of my 2 main pains caused by MS, Burning Mouth Syndrome.
 
A PDF which provides an excellent, thorough review of BMS (Burning Mouth Syndrome).

As this is one of my 2 main daily MS symptoms that doesn't go into remission (thus requires medication, other methods to ease pain) and I know others have reported also having BMS with Multiple Sclerosis, I hope this helps for those who have not found thorough information about a very difficult condition to diagnose and treat.

Hope this helps! :grouphug: Mine's eased by Clonazepam (which is on the list). Seems I'm type 1 according to article.

daisy.girl 08-09-2011 07:47 PM

thanks for this...I too suffer with BMS!

dmplaura 08-09-2011 08:43 PM

Quote:

Originally Posted by daisy.girl (Post 794386)
thanks for this...I too suffer with BMS!

I remember we'd talked about the pains before :hug: When did you recall yours beginning? Did you find a way that works for you to ease the discomfort?

Mine's been around since July 07 (if memory serves me correctly). Today was a more painful day than most. Think I'm working too much and need to slow down.

SallyC 08-09-2011 09:04 PM

I don't suffer from BMS but wanted to send you kids some hugs and well wishes..:hug::hug:

daisy.girl 08-09-2011 09:54 PM

I have had the burning mouth for about a year now. Can't imagine having it as long as you! Mine is not as bad in the mornings, but by the afternoon, it is killing me. Ice water feels wonderful, and if I miss a dose of my Neurontin....it gets worse!!

dmplaura 08-10-2011 07:23 AM

Quote:

Originally Posted by daisy.girl (Post 794418)
I have had the burning mouth for about a year now. Can't imagine having it as long as you! Mine is not as bad in the mornings, but by the afternoon, it is killing me. Ice water feels wonderful, and if I miss a dose of my Neurontin....it gets worse!!

I'm the same with Clonazepam.. I tried to cut back to .5mg daily (I'm at .75mg daily now) and the burning came back full force.

Yesterday the pain was through the roof, honestly. Think I 'overdid' it and caused a flare up.

I find that Stride peppermint gum (their b12+b6 gum as well, "Kinetic Mint") eases my BMS tremendously.

I tried to 'pin' the BMS on something for years that triggered it (medications, dental work, allergies, etc) and can't find ANY cause, save for what neuros have told me: Brain stem lesion. Seeing as how I suffer from Trigeminal Neuralgia as well, affecting the nerves into the head/face, it certainly makes sense that MS caused 'wiring' damage, thus the BMS.

I had my vitamin etc levels fully checked, checked for every A/I disease possible, various other blood work/investigation. All came out 'healthy', save for the MS.

Such a frustrating condition to 'guess' it's the MS.. but then again, doctors and neurologists play the 'guessing game' with the McDonald's criteria daily to diagnose MS. So much uncertainty with this disease.

Thank you Sally you're awesome! :hug:

bobbieoma54 12-12-2011 12:12 AM

Quote:

Originally Posted by dmplaura (Post 794535)
I'm the same with Clonazepam.. I tried to cut back to .5mg daily (I'm at .75mg daily now) and the burning came back full force.

Yesterday the pain was through the roof, honestly. Think I 'overdid' it and caused a flare up.

I find that Stride peppermint gum (their b12+b6 gum as well, "Kinetic Mint") eases my BMS tremendously.

I tried to 'pin' the BMS on something for years that triggered it (medications, dental work, allergies, etc) and can't find ANY cause, save for what neuros have told me: Brain stem lesion. Seeing as how I suffer from Trigeminal Neuralgia as well, affecting the nerves into the head/face, it certainly makes sense that MS caused 'wiring' damage, thus the BMS.

I had my vitamin etc levels fully checked, checked for every A/I disease possible, various other blood work/investigation. All came out 'healthy', save for the MS.

Such a frustrating condition to 'guess' it's the MS.. but then again, doctors and neurologists play the 'guessing game' with the McDonald's criteria daily to diagnose MS. So much uncertainty with this disease.

Thank you Sally you're awesome! :hug:

I have MS and burning mouth syndrome. I have had burning mouth since 2008. Some days are worse than other's. It starts to take over your life, I am on Rebif for MS. Some day's it is like my whole body is on fire and is going to ignite. I have found that if I eat foods with hydronation , mostly the partially hydrogenated soy or cottonseed oils make it worse. I had upper dental implants put in in 2008 then started to get burning mouth . The doctors do not know how to treat it. I do not do well on clonazepam or klonopin, neourtin. I have to take temazepam to sleep. I rinse my mouth with benadril liquid with some relief. This is a dreadful syndrome and I wish they knew more about it. I have read some people have had it for 20 years. It is nice to have a place where other people can understand. Thank you

Koala77 12-12-2011 04:33 AM

Quote:

Originally Posted by bobbieoma54 (Post 831580)
... This is a dreadful syndrome and I wish they knew more about it.....

Hello bobbieoma54, and welcome to NeuroTalk although I'm sorry for the reason that brought you here.

I have MS and although I've never had the symptoms you mentioned here, I do know some-one who did. Here's a website that explains the condition that you might find useful.

http://www.ninds.nih.gov/disorders/g..._neuralgia.htm

SallyC 12-12-2011 11:49 AM

Hi Bobbie.:) I am so sorry for your BMS and pain, but glad you found us. I hope you and your Doc can find the right Med for your relief.


Please stay and join us.:hug:

dmplaura 12-19-2011 09:48 PM

Nice to 'meet' you bobbieoma54 :hug: Sorry to hear that this crappy condition brought you here, but glad you posted. It is comforting to know there's others like us out there. Sorry to hear that you aren't able to take certain medications which are traditionally used to treat the condition. Hopefully you'll have a remission of the burning mouth eventually.


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