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mygrigio (@mygrigio)

Burning Mouth Syndrome. I have it very severe.

Skin Health | Last Active: May 5 11:28am | Replies (537)

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I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Replies to "I am a 55 year old woman who has had this for 13 years. It is..."

Maggie 45, thank you for the feedback. You are very expressive in your description of this condition. As to eating socially, I understand your situation very well. It does impact social relationships. My daughter’s wedding is coming up soon, and I’m very stressed about undergoing all the events, especially the wedding day. I am willing to be contacted by phone by you, but I don’t know how the procedure is set up. It does help to have people who are willing to share their experiences, but I’ve found that it’s difficult to find methods that work for all. Thanks.

I’m so happy for your daughter.
Don’t put to much thought into it.Sometimes we awfulize about things.
Be positive about the upcoming event.
You will be so preoccupied you won’t even notice.
Why don’t we try facebook.
I will friend you,and privately we can share phone numbers.
My name is Patty Cataldi,I’m sure that will work..Good luck.
Hope to hear back from you..

@sheetrock0131 and @lauren123, you can use the private message function to exchange phone numbers safely. However, I also encourage you to continue to share here on this forum as the benefit for many is strong and extremely valuable.
So glad you have found support.

Are you suggesting we use messenger on an I-Phone? Thank you for the encouraging words.

You can private message right here on Connect. Here’s how:
1. Click the @username of the person you wish to PM. This will take you to their profile page.
2. Click “Send Private Message” on their profile page.
Happy connecting.

Hi my name is Patty.I’ve suffered with b.m.s and trigeminal neuralgia. I can tell you from all my expierences,and where I’ve been,and what I’ve done.There is a nerve that comes from the brain,and neurologist know that.They can’t operate because they don’t know what nerve it is.Why,some get it from an accident, some get it from damaged dental work.i.e.hitting wrong nerve.Then there’s pis menopausal women,whom get it from the nerve as well.Last but not least ,depression,can trigger that nerve. All the meds,homopathic meds,acupuncture, priest healers,and hypothesis, can’t do a thing for all of us who suffer.Trigeminal nerve can be helped,with syber knife or gamma knife.But sadly I have both,so I’m not a candidate for that procedure. It is treated with no cutting.They place your head in a type of helmut,and zap the trigeminal nerve .Please keep in touch with me.20 plus years, I have done it all.

Thank you. This is a useful tip for connecting.

I know this feeling have had all teeth pulled and implants put in this is the worst it has ever been sometime I do not think I can take anymore.

Do not have the shots I had shots and was bedridden for a month and it took six months to get back where I was before the shots

Can you please tell me where you got the shots???I was on the internet and found out that oral maxofacial surgeons ate giving patients with bms botox shots.
It has no side effects and can last anywhere from.5 weeks to 5 months.
Dr’s did a study on 5 people with b.m.s and out of the 5,one was a man.They gave the women botox and the man a placebo. All the women got comfort,and the man did not.
Please look it up.Just go to botox shots for b.m.s and you will find all positive news on it.
I’m going February 1st and I’m staying hopeful that it works.
Please let me know what kind of shots you got.
I appreciate it.
God bless

Just a question if you still in this forum. Why stay away from ice cream?. My wife has been suffering with the burning tongue for almost two years only relief is chewing gum (orbit – bubblemint) that is the one that she says it has help. She takes the ice cream to cool her tongue down.

I’m not sure who you mean.I have no problem with eating food ie ice cream or any kind of food.I’m so sorry for you suffering. As a woman I have been suffering for over 19yrs.
I have done just about everything, and taken just about every medication they could give me.
Please look up botox for b.m.s.
Dr’s are now giving patients with this condition. There are no side effects and could last anywhere between 5weeks,to 5 months.
I’m going to see a maxofacial oral surgeon on the 1st of February.
Most insurance companies will pay.
It’s great news for us.
I tried acupuncture, healing priests.
Clonazepam, cymbalta, oxycodine, and many more meds I just can’t write them down.
Please tell me more about this problem.
If you need anything answered, please contact me.
I have much info.to share.
I pray you find comfort. .

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