Something weird with my mouth...

dmplaura · 12-05-2012, 09:13 PM

As many of you know, I have BMS (burning mouth syndrome), believed to be associated with a brain stem lesion from my MS.

I've been battling this burning sensation since mid 2007. It's truly awful. I have to take Clonazepam (Klonopin) and chew peppermint gum to keep my mouth from being a raging fire of pain (like being scaled with hot coffee, worsening as the day progresses).

Today, I noticed an odd taste (at first), then a really odd sensation along the side of my tongue on the right side (where the BMS really did start in my mouth). At first I didn't understand what was going on... it was while making supper that I remarked to hubby, "Oh my gosh, I don't feel burning anymore along my tongue!!!". It's more a numbness with a tiny bit of pin prickly feeling, versus the other side (left) that has the burning mouth thing going full force.

Is this possibly my nerve(s) going into a "healing" process? Or re-wiring around the damaged area? Oh I so, so hope the BMS is going away. I haven't done anything special to help the BMS, just taking my medication regularly. NOW if the BMS goes, I can taper off Clonazepam (oh I so want off these prescription drugs).

Hope everyone's been well. Been SO busy here. January and vacation can't come soon enough!

ANNagain · 12-06-2012, 09:26 AM

Oh, Laura! I hope it means healing. Nerves do rewire.

ANN

SallyC · 12-06-2012, 10:29 AM

Wouldn't that be great, if He is giving you a break, Laura..

Lynn · 12-07-2012, 11:23 PM

Hi Laura

I have everything crossed for you that a healing process is beginning and you will get some reprieve from this nasty symptom.

(((hugs)))

dmplaura · 12-15-2012, 09:51 PM

Thank you all for your kind thoughts and comments.

Quote:

Originally Posted by SallyC

Wouldn't that be great, if He is giving you a break, Laura..

He is giving me a break I believe SallyC. When I was down and out, He was there for me. Each time I prayed with my neighbours for answers, more came in the next day or 2. He is watching his little firecracker of a girl.

Right now I'm dealing with a mouth full of cancer sores. Worst outbreak in a long while. I even had them on my lips (visible a bit). Dreadful pain, but with cankers you can at least dowse them with a warm salt & water mix, swish, wipe the tears off your face, and you get relief for a while. Of course, you ultimately want them gone, and unlike the burning mouth, cankers go away fairly quickly (although there's not been a lengthy period of time during which I've gone completely canker-free since my childhood).

Even though I have the cankers, the burning is still absent on the right side from what I can tell! Hope the cankers clear up soon so I can say for sure if my right side has been spared. Left side needs to catch up now.

Blessings2You · 12-16-2012, 05:56 AM

You have my sympathy--I've been prone to cankers, off and on, most of my life. And worse since MS. But I can't imagine having the constant pain of BMS. I hope it continues to improve.

dmplaura · 12-20-2012, 03:55 PM

Thank you

Right side of mouth feels 'numbish', but importantly, it's not burning still (and I originally noted this December 5 and posted here that day). This is by far the longest I've gone with the burning sensation completely absent from a large area of my mouth.

It's difficult to tell how the left side's doing, as I have my cankers there (more of them, argh... non stop!) and a lot of neuralgia pain/migraine/headache and generally messed up sensory on the left. I don't believe the burning is very intense at all - maybe overshadowed by my other aches and pains?

I'm really curious if, in the New Year, I can try tapering off Clonazepam slowly. I want to wait still a little while to see if the burning comes back at all, or if it's absent. If it's not back, will have to try taking 2 instead of 3 on alternate days to see if the burning returns.

This will be the best Christmas gift ever if the burning is gone for good!

ANNagain · 12-20-2012, 04:46 PM

Very good news, Laura.

Happy Holidays!
ANN

Erika · 12-21-2012, 09:34 PM

Great news that the burning is gone...but the cankers must be annoying. It might be worth having it checked out to see if there is a fungus (thrush) causing them.
There are good meds that can help to treat fungal infections that cause cankers in the mouth.

Often the tongue is coated in a thick whitish paste when there is fungus present. Some people find that fungal infections are common after a round of steroids like prednisone.

Wishing you a speedy recovery

With love, Erika