It's great that you have found some relief for your BMS. I have had symptoms of BMS for the last three months. I went to several doctors who couldn't help me. They took all kinds of tests from oral thrush to Vitamin B deficiency to blood glucose to thyroid, you name it. All test results were normal and my mouth looked perfectly healthy. They finally referred me to a specialist in Boston who is experienced with treating BMS. My appointment isn't until next month, so I'm trying to hang in there. I just wanted to check in and see if you're still doing well with the regimen your doctor gave you. Is the Klonopin still working well for you? I also wanted to let you know that there is a forum for BMS that has a lot of information and great people who are very supportive. It's www.go4hope.org. You may want to check it out. Take care and be well!

Grace

Grace

It's onset was completely sudden. Went to bed 1 day without a burning mouth. Following day, woke up and by night I was wondering why the heck my mouth was so sore and painful.

Taste also altered, however mine's been more a metallic taste than anything else.

I'm trying to avoid foods that give me heartburn, or are highly acidic, to see if this helps. I have gone through periods of time, before and after meds, where the burning mouth is almost completely gone. Then suddenly it's back again.

I'm at a loss as to what's triggering mine, however I may have made another connection last night.... I noticed that I ate peanut butter on toast late at night, which for some reason makes me belch quite a bit, and I can feel it up my esophagus. The burning came back in intensity, so because of the stomach upset, I took a Zantac 150 that I have had around since my neuro prescribed them this year to use during steroid infusions for MS relapse. Well, an hour after taking the Zantac, the burning started to calm down.

Possibly related to stomach irritation in general? Maybe due to the stress and anxiety I was in pre-MS diagnosis, I in turn caused my stomach to begin acting up and that's translating to the mouth?

I don't believe it's any 1 factor in my case. It's a few factors working together that resulted in this if you ask me.

Hi Grace:

I always said it's like a color wheel of sensations. Sometimes salty, sometimes sour, sometimes burning, but most of the time these days, is this sandpaper gritty tonge that never goes away, seems like when the salty comes back, the grittyness is less.

When I first started to notice something was wrong many years ago,
it started as a sour, then went to salty all of the time, Sooo salty like rock salt!!..then the burning kicked in from time to time and finally started the gritty sensation on the top of my tonge which NEVER goes. I was so stressed and perplexed with theses strange symtoms which even my Family Dr. was perplexed. I Also feel what may keep us all sane it the fact that it does change from time to time.

IT IS A MEDICAL MYSTERY!!! I feel singled out sometimes, have a better
chance of wining the state lottery then getting this!!!

I do admit I drink Much wine and coffee. I read a post where someone mentioned a overly acidy body in general may be the reason. If the
mouth saliva is very acidy, from the body, maybe can cause the nerves in the tonge to become damaged.

When I first got my BMS, it started out as a very bitter taste with slight burning. Now it has changed to a very salty taste and more intense burning (you're description of rock salt describes it perfectly). It has really affected my appetite because everything tastes salty. It's just awful. My doctor prescribed Clonazepam. I've been on it for 5 weeks and it has helped only slightly with the burning but has had no effect on the taste I know you've had BMS for many years, have you ever taken any medication or supplements that gave you any relief? That's interesting that having an overly acidic body may cause the nerves in the tongue to be damaged. I had not heard that before, but since there seem to be so many things that could cause it, it certainly seems feasible. I know there are kits you can order to test the PH balance in your body, I may just look into that. I know what you mean about feeling singled out. I have never met one single person in my real life (meaning except on these forums) that has BMS or knows someone that has it, or has ever even heard of it for that matter. It really helps to hear from others that have this terrible condition and to see that they are managing to cope. I'm early in this process and there are days when I truly feel that I'm losing it. I wish none of us has to suffer like this, but it truly helps to know that others understand and we're not alone. Thanks John and hang in there! Grace

Over the years people come and go from this site. Always seems that after a year or so most never come back. When this is new, people search for answers and find this site. For most they don't come back
not because their BMS has gone, but simply they get used to it knowing
it may never go. In the begining it was Extremely depressing and
scarey, most feel that way. Today I wish it would go but after 4 years I'm not hopeful it will. After a year or so, you may not come back yourself but we're glad to help. I will always check in from time to time. It is just a extremeley strange disorder I would not wish on anyone. Yor're right, when you say almost no one has heard of this disorder and mostlikey you will never know someone who has a disorder of the tongue like this one.

Finally, I have mentioned this before in my posts. As rare this disorder my seem to be, I did find it, in two older family health journals, meaning that it was seen many years ago and ironically
enough more common many years ago to be in a family healh jounal!!??

My dentist is referring me to a dermatologist and another specialist to check bloods etc. I did read somewhere that this can be caused by nerve damage. I have been told by my dentist that I need a root canal in my upper right front tooth and I am wondering if the BMS symptoms could be linked to the fact that I need to have the root canal done?

If anyone has any advice on the above, I'd be grateful.

My thoughts and prayers are with everyone who is suffering with this condition.

Probably the best thing you could do the lady patient who is suffering would be to tell her about this site,(if she has the internet) and maybe if shes lucky, she will find something that helps someday..