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sheetrock0131

burning mouth syndrome,or bms

Posted by @sheetrock0131 in Just Want to Talk, Apr 18, 2012

Has anyone been treated and helped at Mayo clinic for this condition?I am considering going for treatment.I have been to many clinics in the Boston area,all they do is try different meds.If anyone has been helped i would enjoying talking with them..This has been an 18yr. long condition...

lauren123 likes this
ladenole

Posted by @ladenole, Oct 2, 2016

I noticed the left side enlargement of my tongue in 2007. It was causing mild burning pain at the time.... enlargement stays all the time, severe pain 70% of tree time and moderate pain 30% of the time. Nothing has helped, colds make the pain in my mouth go up exponentially. I have seen at least 20 different docs including several at jax mayo clinic. They only think i tell the truth about the pain i am in bc of the marked swelling of my tongue. Every blood test is perfect except a mild ana positive sign. No one can help. Going on ten years. My life has been greatly diminished by the pain. I feel crazy.

sheetrock0131

Posted by @sheetrock0131, Oct 2, 2016

Sorry for your pain.you are not crazy.i am a 20 plus sufferer of bms.i live less than 6 miles from the Boston area, i have been to Brigham and womens,Tufts cranial facial and pain clinic,Beth Isreal hospital, Mass General Hospital. .There has been no treatment that can help this condition. Meds are the only source of temporary treatment. I am on Cymbalta,Clonazepam, low dose of Oxycodine. The depression is very bad.I am soon to be 67 yrs old.
There are no golden yrs for me.
This condition is so debilitating, somedays i feel like i just can't go on.
I now go to a pain clinic.I recieve nerve blocks,wich intail 25 shots a month.

I also have trigeminal neuralgia.
I am sad for all the people who suffer like me.BMS hits young,old,mostly women.Please feel free to contact me anytime..
I did recently read a story about a woman who suffered for many years with BMS, and she came across a Dr in Colorado.This specialist gave a tounge swab,and found out she was carrying a herpes germ, she caught.
They put her on Valtrex for a month and is rid of her BMS.

I went to see a infectious diseases Dr.Who swabed my mouth ,but found nothing.
She was lucky..
I would give that a try,you have nothing to lose..Good luck,maybe it will be worth the trip to Dr...

mfelton

Posted by @mfelton, Oct 9, 2016

I have had BMS for years and have just this past week taken something that has helped. I also have Neuropothy, The Neurologist gave me medication for that and it has really helped my BMS, I wish I had had it 8 or 10 years ago its really made a difference, the medication is Lomotrigine.

lauren123 likes this
sheetrock0131

Posted by @sheetrock0131, Oct 9, 2016

I also.am a 20 plus sufferer of bms,and i.also have trigeminal neuralgia. I get anout 25 nerve blocks a month,for the neuralgia, but nothing has helped my bms.
Ive been to many hospitals in Boston,i am currently taking cymbalta and oxycodine, and clonazepam. .
It does interfere in ypur everyday life.
Its a debilating condition.
Somedays i feel like i just cant go on.
I also had accunpuncture, but sadly nothing helps..If you need any quest answered, please feel free to ask
.

sheetrock0131

Posted by @sheetrock0131, Oct 9, 2016

Thank you for that information, im going to run it by my neurologist. .Any piece of info.is greatly appreciated. .

bjsday

Posted by @bjsday, Oct 20, 2016

So sorry-this is very discouraging because I've only been suffering with the burning, pain and mouth ulcers for 3 yrs and was hoping to find some answers on this website. I've been to 9 different types of doctors with no relief and no diagnosis. After reading all these posts, it appears that there is nothing that can be done. I'm not even sure I have BMS. It was suggested by a couple of dentists that It may be BMS, or autoimune or lichen planis so I just don't know where to turn next. My question to you is have you found any mouth wash/toothpaste that does not burn. Also, most foods and beverages are impossible to eat due to my painful tongue or the burning. Have you been advised to stay away from any particular preservatives or food additives. I wish you well and hope there is help out there somewhere for both of us.

sheetrock0131

Posted by @sheetrock0131, Oct 21, 2016

Sorry to hear your story..I will tell you ,lichen planus,is completely different from bms.My husband had it for quite a while.The symptons are ulcers in the mouth.He had it on his cheek,in the inside of his mouth.Its terribly uncomfortable, but with special cream,in no time,it was gone..BMS is completely different. He saw a specialist at Tufts clinic in Boston.I also went to Tufts cranial facial clinic,for treatment, but nothing worked.If you would like to discuss this subject further, please dont hesitate. .Im a 20 plus year sufferer..

lauren123

Posted by @lauren123, Fri, Jan 27 at 12:19am CST

Thank you so much. I will discuss this with my Pain Management Doctor. I other medications are not working as they once were. Perhaps I am developing a tolerance. Please let me know if you are taking other medications.

maggie45

Posted by @maggie45, Sat, Feb 4 at 2:38pm CST

Hi @mfelton,

I am new to this site and just read your posting. I have just been started on Lamotrigine, 25 mg. every other day for a wk. then one per dy. Are you still taking it? Could you tell me what dosage and how long it took to feel a difference? I was initially scared to take it after reading the warning about a possible side effect of a severe rash that could even cause death.. but I am so desperate I decided to try it anyway.
Please let me know if you are still checking in.

Thanks,
Maggie45

colleenyoung

Posted by @colleenyoung, Oct 2, 2016

Welcome to Connect, @ladenole. I cannot imagine how difficult it is to not have found relief for almost 10 years. I'm tagging fellow members @mfelton @iluvkatz @uncbball and @susanlcw to bring them into this discussion as they have recently talking about burning mouth syndrome as well.

Ladenole, you may also be interesting in reading these discussions on BMS; one older, one recent:
- Burning Mouth Syndrome very severe http://mayocl.in/2dnfRpH
- Burning mouth syndrome (BMS) http://mayocl.in/2dKba8p

What to you use to relieve the pain? What foods can you eat and what do you avoid?

sheetrock0131

Posted by @sheetrock0131, Oct 2, 2016

If anyone needs to ask a question,please feel free.im a 20 plus yr sufferer.i gone the whole route..

amberpep

Posted by @amberpep, Oct 30, 2016

Hi .... this sounds absolutely awful ... I feel so sorry for you all who have to deal with it. Do they have any idea at all what causes it? It's obvious, from the number of people who have written, there are a lot of folks living with this, so it seems they should be working on some treatment. I can't even imagine what you're going through. If I eat too much chocolate, I'll get mouth ulcers, or my tongue will burn, but nothing like you're describing. Mine is my own doing and is gone in a day or so.
I have never heard of this before, but I'm sorry for all of you who are having to deal with it.
abby

sheetrock0131

Posted by @sheetrock0131, Oct 9, 2016

There aren't any foods that will worsen bms.I have been on cymbalta,clonazepam, and a small dose of Oxycodine. Medication helps only to a point.There is nothing that can completely take it away.My bms started after a learning student gave me a novacaine ,and damaged my nerve.I will have it for the rest of my life..I pray for all who suffer..
Please feel free to contact me by private message.

colleenyoung

Posted by @colleenyoung, Oct 9, 2016

Hi @sheetrock0131. Thank you for the further explanation.
You'll notice that I removed your personal email from your message. To exchange messages privately with other members, it is more secure to use the private message function. That way you won't get unwanted spam.

Here's how to send private message.
1. Click the member's @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.

mfelton

Posted by @mfelton, Oct 14, 2016

l have had BMS for several years . hot pepper sauces helped me better than anything else I tried. I recently went to a neurologist for other problems and have been taking another medicine (lamotrigine) and it has helped along with pain pill.

sheetrock0131

Posted by @sheetrock0131, Tue, Feb 7 at 3:59pm CST

My Name is Patty,in response to the Lamotrigine, i take i twice a day.
Morning and night.25 mil.I to read the side effects and they are scary.Sometimes you just have to overlook them.An asprin also shows deadly results.Just an example.
It didn't take long to kick.in.Keep.me posted.Thanks

kanaazpereira

Posted by @kanaazpereira, Oct 13, 2016

Hello @sheetrock0131 and @ladenole
I cannot even imagine your pain, and how difficult it must be living with Burning Mouth Syndrome for such a long time!

In one of your first posts, @sheetrock0131, you indicated that you were interested in learning more about Mayo Clinic and it's treatment paths for BMS. Have you visited the Clinic's overview/treatment options page? If not here is a link:

http://mayocl.in/2ebUG8h

I think you will find a lot of relevant information regarding BMS care at Mayo Clinic. Does this help prepare for your upcoming appointment with the neurologist?

sheetrock0131

Posted by @sheetrock0131, Oct 13, 2016

Thanks for your feedback.I did talk to my neurologist about the Mayo clinic.His thoughts about it,was he felt he could do and treat me the same way Mayo does..I believe it's going to be trial and error.I have exhausted every Avenue I can,all lead me to the same place.My tounge continues to burn..I am always depressed,due to the fact ,this will stay with me for the rest of my life..It debilitates me..I wanted to travel to Arizona with my husband to Mayo clinic.We own a large r.v.and would have no problem going,but I think that the same treatment that I'm getting here would be the same there.I could be wrong..

sheetrock0131

Posted by @sheetrock0131, Oct 13, 2016

Do you know of anyone who was treated and cured at Mayo???

maggie45

Posted by @maggie45, Fri, Feb 10 at 3:53pm CST

Hi Pattty,

Thanks for getting back to me about the Lamotrigine- I thought it might be causing me nausea that I've been experiencing since starting it but I've now started taking it with food at lunch (the last real meal I can seem to eat lately)- which brings me to my next question for you- what are you able to eat? After being given chlorhexidine to help with my dry mouth- not only did the burning start up but I also lost my sense of taste. Foods I was able to eat a year no longer are bearable- I am living off a oatmeal, eggs; no fruits except an apple and most veggies taste awful as does meat. I can only drink water. Even protein smoothies are not going down well. Is this typical of this condition? I am so afraid if I ask my GI Dr. he will want to do another endoscopy -he didn't do the first one where this incompetent forced an instrument down my tortuous, i.e. twisted esophagus which was the start of this on-going nightmare. As a result, I am terrified of even going to an ENT Dr.- they don't believe me when I tell them how painful it is when they examine my throat and spray it with a numbing agent- which only causes me additional pain after it wears off. I am so tired of them treating me like I'm crazy.. I can't tell you how often I think of you- and you are in my prayers because I can't imagine how you have coped all these years you've had to deal with it.

Thank you again.

Maggie 45

kanaazpereira

Posted by @kanaazpereira, Oct 14, 2016

Hi @sheetrock0131,
Here are some links that I hope will be useful:

Details about a BMS Clinic at Mayo in Rochester, MN

http://mayocl.in/2dcrO3F

Although you are correct, in that there is no known cure for BMS, Mayo Clinic conducts ongoing research to improve the quality of life for patients with this chronic condition. This link will take you to research developments:

http://mayocl.in/2dpAHFy

Thank you for starting this discussion on Burning Mouth Syndrome to bring together patients with the same condition like @ladenole @mfelton. Hopefully others will also join to help find solutions.

sheetrock0131

Posted by @sheetrock0131, Nov 25, 2016

I have been connected to mayo clinic discussions.can you please tell me how i can give this info.to connect to Mayo clinic discussions.He suffers from all over body pain,and would like to be part of the discussion. .How does he connect???please respond..Thank you Sheetrock 0131

kanaazpereira

Posted by @kanaazpereira, Nov 25, 2016

Hi @sheetrock0131,

I'm sorry to hear that he is going through this pain, but so glad to know that he would like join Mayo Clinic Connect, and hopefully get some answers from other members.

Here's some information on How to Get Started;

https://connect.mayoclinic.org/get-started-on-connect/

I would suggest that he set up an account of his own on Connect, by going to this registration page:

https://connect.mayoclinic.org/register/

If you would like additional help, you may also use the following link to contact a community moderator:

https://connect.mayoclinic.org/contact-a-community-moderator/

How are you doing, @sheetrock0131?

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