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Hello and Help
Hello! This is my first time posting here, but I have been following this board for several months. I really appreciated everyone's positive attitude and advice.
Here is my story. I am 32 years old. In the fall of 2009 I started noticing my little toe on my left foot was going numb. It would come and go, so I didn't think too much of it...thought it might be some tight shoes causing it. In December 2009 I woke up one morning with blurred vision in my left eye. It didn't hurt much at first. Just blurring, and occasionally the lower half of my eye would go black. I went to several doctors and was finally diagnosed with optic neuritis. The eye doctor asked me if I had any tingling or numbness in my extremities and I told them about my toes.
From there I was referred to a neurologist to be on the safe side. Of course I was a bundle of nerves! The neurologist did a brain and spinal MRI. The brain came back without lesions, but the spinal had lesions in the cervical spine. My neuro then ordered a LP and an Evoked Potential Test. The LP came back abnormal. The EPT came back normal. They also tested me for Devic's, but that test came back negative. At that time my neuro decided he had enough evidence to diagnose me with MS. I started taking Avonex in March 2010. I know I am VERY lucky to have been diagnosed so quickly...only a few months from my first symptoms. However it was all scary and a whirlwind of tests.
My one year follow up was last month. At that time I was fine. I had not had anything new, only occasional tingling still in my left toes. I also feel like I get really run down at times, but I have 2 small kids, so that could contribute as well!! My optic neuritis cleared up on its own. I had eye pain for about 6 months, but have been fine since.
Fast forward to this month. I had pneumonia about a month ago. I took some really strong antibiotics to get over it...Levaquin and something else through the IV at the hospital. I got over the pneumonia OK. Then 2 weeks ago I started using a whitening mouthwash. It caused me to have canker sores and I started having pain, so I stopped using it after 3 days. The burning pain in my mouth continued. The pain was very random, not on one side, but different spots all over at different times. My PCP diagnosed me with thrush. She said the combo of the antibiotics I took for the pneumonia and the whitening mouthwash caused the oral thrush. I also used an inhaler which I didn't realize until later can cause thrush. I started using miracle mouthwash and was later prescribed Diflucan.
My problem is I am worried it is not thrush. I am still taking the meds for thrush, but not seeing much results with pain. I am still having burning pain, but now it seems to all be concentrated on my left side of my mouth. I have one spot on my lip that bothers me. I also have burning pain on my left side of my tongue and my teeth, but only occasionally. I do not see any tell tell sign of thrush. I have a whitish looking tongue, but no white spots in my mouth. I am worried about TN. The pain does not come and go quickly. It seems worse as the day goes on. Some days the pain is worse than others. I also read about burning mouth syndrome. One day last week the pain got so bad I just had to go to bed. When I woke up it was gone. I called the neuro when all of this started (when the pain was on both sides of my mouth) and they said the whitening mouthwash was the likely cause of my pain. What do you think? Does anyone know if thrush hurts this bad? I am scared about the thoughts of TN. I have made peace with having MS. It stinks, but my philosophy has always been "Things could be much worse".
Thanks for reading and for any help.
Debbie
Here is my story. I am 32 years old. In the fall of 2009 I started noticing my little toe on my left foot was going numb. It would come and go, so I didn't think too much of it...thought it might be some tight shoes causing it. In December 2009 I woke up one morning with blurred vision in my left eye. It didn't hurt much at first. Just blurring, and occasionally the lower half of my eye would go black. I went to several doctors and was finally diagnosed with optic neuritis. The eye doctor asked me if I had any tingling or numbness in my extremities and I told them about my toes.
From there I was referred to a neurologist to be on the safe side. Of course I was a bundle of nerves! The neurologist did a brain and spinal MRI. The brain came back without lesions, but the spinal had lesions in the cervical spine. My neuro then ordered a LP and an Evoked Potential Test. The LP came back abnormal. The EPT came back normal. They also tested me for Devic's, but that test came back negative. At that time my neuro decided he had enough evidence to diagnose me with MS. I started taking Avonex in March 2010. I know I am VERY lucky to have been diagnosed so quickly...only a few months from my first symptoms. However it was all scary and a whirlwind of tests.
My one year follow up was last month. At that time I was fine. I had not had anything new, only occasional tingling still in my left toes. I also feel like I get really run down at times, but I have 2 small kids, so that could contribute as well!! My optic neuritis cleared up on its own. I had eye pain for about 6 months, but have been fine since.
Fast forward to this month. I had pneumonia about a month ago. I took some really strong antibiotics to get over it...Levaquin and something else through the IV at the hospital. I got over the pneumonia OK. Then 2 weeks ago I started using a whitening mouthwash. It caused me to have canker sores and I started having pain, so I stopped using it after 3 days. The burning pain in my mouth continued. The pain was very random, not on one side, but different spots all over at different times. My PCP diagnosed me with thrush. She said the combo of the antibiotics I took for the pneumonia and the whitening mouthwash caused the oral thrush. I also used an inhaler which I didn't realize until later can cause thrush. I started using miracle mouthwash and was later prescribed Diflucan.
My problem is I am worried it is not thrush. I am still taking the meds for thrush, but not seeing much results with pain. I am still having burning pain, but now it seems to all be concentrated on my left side of my mouth. I have one spot on my lip that bothers me. I also have burning pain on my left side of my tongue and my teeth, but only occasionally. I do not see any tell tell sign of thrush. I have a whitish looking tongue, but no white spots in my mouth. I am worried about TN. The pain does not come and go quickly. It seems worse as the day goes on. Some days the pain is worse than others. I also read about burning mouth syndrome. One day last week the pain got so bad I just had to go to bed. When I woke up it was gone. I called the neuro when all of this started (when the pain was on both sides of my mouth) and they said the whitening mouthwash was the likely cause of my pain. What do you think? Does anyone know if thrush hurts this bad? I am scared about the thoughts of TN. I have made peace with having MS. It stinks, but my philosophy has always been "Things could be much worse".
Thanks for reading and for any help.
Debbie
Hi Debbie. Why is it that anything that happens has to lead to another thing happening. I guess that old song about every bone being connected to another had a real point to make.
Lulu is right about thrush being painful and difficult to treat. The white on your tongue could be thrush. It is also possible for it to have traveled down your esophagus and be causing the symptoms you are thinking are GERD. In fact, that's more likely than GERD causing these symptoms in your mouth.
There's a good chance you need more treatment for the thrush. There is a liquid (Nystatin) you can take that works by making direct contact. It can also be kind of soothing. Four times each day you swish it around in your mouth to coat all surfaces and then spit or swallow depending on how the doctor instructs. Then nothing in your mouth for half an hour.
Yogurt might be helpful in establishing new colonies of beneficial bacteria in your mouth. You'd have to hold it in your mouth before swallowing for the best chance of success. I doubt it will do the trick without more of the specific anti-fungal medicine.
It is most important to rinse (or brush) after using inhalers that contain steroids. If your doc didn't mention it, maybe you are using a different type of inhaler. It never hurts though and sometimes the docs don't remember to mention the details about taking the things they Rx. Check the box or drug circular inside to be sure.
If the Diflucan doesn't seem to be helping I'd ask the doc about switching to something else or adding on. Hope you are feeling better soon.
Mary
Lulu is right about thrush being painful and difficult to treat. The white on your tongue could be thrush. It is also possible for it to have traveled down your esophagus and be causing the symptoms you are thinking are GERD. In fact, that's more likely than GERD causing these symptoms in your mouth.
There's a good chance you need more treatment for the thrush. There is a liquid (Nystatin) you can take that works by making direct contact. It can also be kind of soothing. Four times each day you swish it around in your mouth to coat all surfaces and then spit or swallow depending on how the doctor instructs. Then nothing in your mouth for half an hour.
Yogurt might be helpful in establishing new colonies of beneficial bacteria in your mouth. You'd have to hold it in your mouth before swallowing for the best chance of success. I doubt it will do the trick without more of the specific anti-fungal medicine.
It is most important to rinse (or brush) after using inhalers that contain steroids. If your doc didn't mention it, maybe you are using a different type of inhaler. It never hurts though and sometimes the docs don't remember to mention the details about taking the things they Rx. Check the box or drug circular inside to be sure.
If the Diflucan doesn't seem to be helping I'd ask the doc about switching to something else or adding on. Hope you are feeling better soon.
Mary
Thanks for the responses. Yes, I was officially diagnosed March 2, 2010. My mouth is still bothering me, but today it has been again on both sides, not just the left. Hoping that is a good sign to NOT be something worse like TN. I have never had thrush before, so maybe this pain is normal. I also began thinking today that it may be acid reflux. I have noticed I have had more heartburn lately. I was never told to rinse my mouth after using my inhaler! Looks like the doctor would have told me. I will definatley do that from now on! Thanks for the support!!
Trigeminal Neuralgia...you can read about the dreaded TN on the health pages or in search this community..both on top right hand side of this page
Hi Debbie
I am guessing that we were probably diagnosed around the same time last year if you were diagnosed then (I was diagnosed on 25 March 2010 althoguh I think I have had it for a lot longer). Like you I was lucky (if there is such a thing) in that I was diagnosed very quickly and so have not had to linger in the limboland and uncertainty that many people endure.
It must be very tough coping with all this with two young children and the mouth ulcers sound very painful and uncomfortable. I suggest that you try rinsing your mouth with salt water. You mentioned you use an inhaler (and my daughter and Mum also have asthma and they have both had oral thrush.They were advised by doctors to rinse their mouths out with water after every time of using their inhaler). It may just take time for the ulcers to disappear but the mouth and gum are very significant in terms of your overall health so if they have not gone in a few days I would go back to your doctor or speak to your dentist who may be able to advise on dental hygiene to help everything heal more quickly.
Hope things improve for you really soon and welcome to a great forum full of wonderful people.
With best wishes
Sarah
I am guessing that we were probably diagnosed around the same time last year if you were diagnosed then (I was diagnosed on 25 March 2010 althoguh I think I have had it for a lot longer). Like you I was lucky (if there is such a thing) in that I was diagnosed very quickly and so have not had to linger in the limboland and uncertainty that many people endure.
It must be very tough coping with all this with two young children and the mouth ulcers sound very painful and uncomfortable. I suggest that you try rinsing your mouth with salt water. You mentioned you use an inhaler (and my daughter and Mum also have asthma and they have both had oral thrush.They were advised by doctors to rinse their mouths out with water after every time of using their inhaler). It may just take time for the ulcers to disappear but the mouth and gum are very significant in terms of your overall health so if they have not gone in a few days I would go back to your doctor or speak to your dentist who may be able to advise on dental hygiene to help everything heal more quickly.
Hope things improve for you really soon and welcome to a great forum full of wonderful people.
With best wishes
Sarah
Ok, not to be stupid here but what is TN? Sorry, followed the story until I got to that and have no idea.
Julie
Julie
Hi Debbie,
Wecome out of the shadows - we always like to meet our new members and hear their story. I'm with you with the fast dx - so much better than being in limbo for a long time.
Thrush can be painful and take a while to resolve. I wonder if the thrush could have inflammed the nerves somehow. You know I'm not a medical expert and can only speculate on this point.
TN scares me too- the people here with TN really struggle to find comfort.
be well and feel better,
Lulu
Wecome out of the shadows - we always like to meet our new members and hear their story. I'm with you with the fast dx - so much better than being in limbo for a long time.
Thrush can be painful and take a while to resolve. I wonder if the thrush could have inflammed the nerves somehow. You know I'm not a medical expert and can only speculate on this point.
TN scares me too- the people here with TN really struggle to find comfort.
be well and feel better,
Lulu
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