Small fiber neuropathy - tongue

Posted by tbyjr2022 @tbyjr2022, Aug 21 8:37am

Hi! I was wondering if anybody in the SFN community has had any symptoms present in the tongue?
I have SFN (approx 2 years) albeit mild (mostly in lower legs). I also have BFS (going on 8 years) For about 2 months now I have been experiencing what I can best describe as a dry tongue (front to back). Leading up to this, I was experiencing tingling or mild burning sensations in the tongue. Neurology tongue exam is normal (strength, movement, etc, and they believe MND is not the trajectory); ENT exam (scoping, motility, pH, etc) all normal; Sjogrens and burning mouth syndrome ruled out. No infections, etc. Tongue appearance is pretty normal. Neuro doc is suggesting my tongue symptoms are a manifestation of SFN. Its just super weird to me that it feels dry (as does, occasionally, the soft palate), and I haven’t found much at all in “search” that indicates this is a typical SFN symptom.
Appreciate any sharing of thoughts and experiences!

Interested in more discussions like this? Go to the Neuropathy group.

Hello @tbyjr2022, Welcome to Connect. I just have numbness in the feet and legs with my small fiber neuropathy and haven't heard others with the diagnosis mention symptoms in the tongue area. While we wait for others to find your discussion and share their experience, I did find a couple of related articles that seem to discuss similar symptoms associated with small fiber neuropathy.

"however, she developed a burning and tingling sensation in … a tingling sensation in the
tongue and a crawling feeling of … were negative for large-fiber neuropathy. The skin biopsy was…"
— Small-Fiber Neuropathy Possibly Associated with COVID-19: https://www.karger.com/Article/Abstract/524205

"… Burning pain or other small fiber-related symptoms may present with a strictly circumscribed
distribution in conditions classified as focal SFN."
— Non-length-dependent small fiber neuropathy: Not a matter ofstockings and gloves: https://onlinelibrary.wiley.com/doi/epdf/10.1002/mus.27379

Have you had COVID 19 in the past?

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Hello!
I've got exactly what you're describing, very dry tongue and mouth, not enough saliva, dental decay and fixing my teeth it's awful, making my mouth so dry while at the dentist!
SFN and this dry mouth for about five years now. And also my taste is very limited, but got used to it.
My neurologist says, could be sjogrens, but haven't got more symptoms, so didn't get more tests to confirm. Just my ANA blood test is positive.

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I have tongue issues as well. It is burning and sometimes my lips and gums also burn. I also have dry mouth which could be due to SFN and/or from the medications to treat SFN. It seems this is not a common symptom but I believe it is due to SFN. The gabapentin and duloxetine medication help with the burning sensation throughout the body but they do not help with the burning sensation in my mouth. You are not alone. My dentist recommended I sip water throughout the day and use mouthwash targeted for dry mouth.

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I have dry mouth too. I am on Lyrica also known as pregabalin and it causes dry mouth and throat. I have some cough candies that I use to help this problem and of corse sips of water.

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@tessie63

I have dry mouth too. I am on Lyrica also known as pregabalin and it causes dry mouth and throat. I have some cough candies that I use to help this problem and of corse sips of water.

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I find Walgreen's Mouth Rinse for Dry Mouth works much better than other products. It is sugar free and contains xylitol. I take at bedtime and occasionally during the night.

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Amitriptyline is often prescribed for neuropathy and that causes dry mouth and an increase in thirst. Other meds can too. That said I get neuropathy in my tongue at times, usually mild, sometimes severe pain as well. Today just pins and needles on the first inch or so. Have you tried slowly sucking a boiled sweet? And making sure you aren't dehydrated? It wont solve any major issues, but may make you more comfortable in the meantime.

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I use oral 7 toothpaste, and gel before bed. The dryness come and go, some days are better than the other. Got used to it I guess.

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My diagnosis is geographic tongue( cause unknown). Using ginger based foods, especially ginger teas and ginger candy(Winners) help. Lemon ginger especially soothes my paining oral area. Some foods increase my pain. I’m grateful to be in “remission” now.

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I have geographic tongue. When I eliminated gluten from my diet it mostly went away.

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My son has geographic tongue and he was told to stay away from any food with acid in it such as spaghetti sauces and orange juice. He no longer has an issue.

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Hello.
This is a middle of the night writing so please forgive any errors or oddities.
My journey is new and still very terrifying. I was recently diagnosed with sensory- motor axonal polyneuropathy. Still trying to come to grips with it. It’s been moments of panic and lots of denial. Neither the Neurologist that performed the EMG/NCS or the one who ordered it could provide many answers other than to say it affects sensory and motor nerves, it’s systemic, and they do not know why it’s happening or how far it will progress. (I’m not sure if that is the same as the SNF mentioned in this thread?). I have an appt with yet another neurologist but not for another month!!
What led to testing and diagnosis for me was a progression of burning and buzzing that started in one foot then advanced up to knee then went on to do the same on the other leg. At first, I could only feel it while laying down. Now it’s constant. I also have blood flow issues, my feet get really red. Initially diagnosed and treated as Raynauds. Around the same time on top of my regular tinnitus, I developed a roaring engine that was in synch to the buzzing in my feet and felt like it was coming from outside of my body.

Symptoms I noticed prior that are intermittent: burning top of scalp, which is sometimes visibly inflamed. There have been days it hurt to move my hair- I thought it was an atypical headache. Burning in my mouth & sometimes lips and down throat.
A sensation of something sitting across nose(like glasses), swelling, red nose & purplish tint under eyes at times. ENT and doctors- it would take too long, but the ENT said nothing in my mouth and looked at me like I was nuts when I told him about the in-synch buzzing in legs and roaring in ears.
Lastly, balance and coordination. I feel my hands shake sometimes doing normal things that require little exertion- like taking a selfie, I have a difficult time hitting the right key on my phone when texting and this is constant.. When I walk, especially with my dog, I do stumble sideways a lot. I am not sure how to know if my gait issues are related, and if they feel worse simply because of the diagnosis…
I am hoping someone can speak to s few of these potential symptoms.
I also would be interested in hearing about others with similar diagnosis- the journey, cause, prognosis.

Thank you so much.

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@nursegbythesea

Hello.
This is a middle of the night writing so please forgive any errors or oddities.
My journey is new and still very terrifying. I was recently diagnosed with sensory- motor axonal polyneuropathy. Still trying to come to grips with it. It’s been moments of panic and lots of denial. Neither the Neurologist that performed the EMG/NCS or the one who ordered it could provide many answers other than to say it affects sensory and motor nerves, it’s systemic, and they do not know why it’s happening or how far it will progress. (I’m not sure if that is the same as the SNF mentioned in this thread?). I have an appt with yet another neurologist but not for another month!!
What led to testing and diagnosis for me was a progression of burning and buzzing that started in one foot then advanced up to knee then went on to do the same on the other leg. At first, I could only feel it while laying down. Now it’s constant. I also have blood flow issues, my feet get really red. Initially diagnosed and treated as Raynauds. Around the same time on top of my regular tinnitus, I developed a roaring engine that was in synch to the buzzing in my feet and felt like it was coming from outside of my body.

Symptoms I noticed prior that are intermittent: burning top of scalp, which is sometimes visibly inflamed. There have been days it hurt to move my hair- I thought it was an atypical headache. Burning in my mouth & sometimes lips and down throat.
A sensation of something sitting across nose(like glasses), swelling, red nose & purplish tint under eyes at times. ENT and doctors- it would take too long, but the ENT said nothing in my mouth and looked at me like I was nuts when I told him about the in-synch buzzing in legs and roaring in ears.
Lastly, balance and coordination. I feel my hands shake sometimes doing normal things that require little exertion- like taking a selfie, I have a difficult time hitting the right key on my phone when texting and this is constant.. When I walk, especially with my dog, I do stumble sideways a lot. I am not sure how to know if my gait issues are related, and if they feel worse simply because of the diagnosis…
I am hoping someone can speak to s few of these potential symptoms.
I also would be interested in hearing about others with similar diagnosis- the journey, cause, prognosis.

Thank you so much.

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Welcome @nursegbythesea, I think you are not alone in your feelings with this condition. There is another discussion that you might find helpful:

— Axonal Sensorimotor Polyneuropathy: Looking for someone to relate: https://connect.mayoclinic.org/discussion/someone-to-relate/

You mentioned you have an upcoming appointment in a month with another neurologist. I'm sure you have questions that you are trying to get answered. One thing that helps me is to plan my conversation with my doctor if it's something I'm nervous about or really need some answers. The Patient Revolution website has some useful tips to help plan your conversation that you might find helpful if this is something you want to do — https://patientrevolution.org/visit-tools.

Have you thought about questions you want to get answered?

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