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Anyone experience neuropathy in throat and back of tongue, even facial pressure?

A MyMyelomaTeam Member asked a question 💭
Pendleton, SC

Experiencing raspy voice, pain/discomfort in back of throat, even nasal in same area.
This is a constant and feels so much worse first thing in morning as dry mouth/excessive thirst is also issue 24/7.
I welcome your stories.

October 6
 · 
Reactions

Answer Summary

Members responded with empathy and helpful personal experiences to a question about neuropathy in the throat, dry mouth, facial pressure, and... Read more

Members responded with empathy and helpful personal experiences to a question about neuropathy in the throat, dry mouth, facial pressure, and raspy voice related to multiple myeloma. Several members shared practical remedies including keeping water with lemon by the bed, using Biotene or coconut oil inside the mouth, drinking green tea, and taking Nutritional Yeast for neuropathy. A recurring theme was the importance of reporting all new symptoms to an oncologist, with members flagging conditions like amyloidosis and CKD as possible contributing factors worth discussing with a care team.

MyMyelomaTeam

What a frustrating combination of symptoms to deal with — especially when they hit hardest first thing in the morning. These kinds of experiences are worth taking seriously and discussing with your oncology team.

Peripheral neuropathy in myeloma doesn't always stick to the hands and feet. Myeloma-related bone lesions can put Show Full Answer

What a frustrating combination of symptoms to deal with — especially when they hit hardest first thing in the morning. These kinds of experiences are worth taking seriously and discussing with your oncology team.

Peripheral neuropathy in myeloma doesn't always stick to the hands and feet. Myeloma-related bone lesions can put direct pressure on nerves in unexpected areas, including the jaw, skull, and facial regions, which can cause numbness, pain, or unusual sensations in the face, throat, and surrounding areas.

Dry mouth and excessive thirst can also be connected to myeloma itself or its treatments, and can make throat discomfort feel significantly worse, particularly overnight when you're not drinking.

Some things worth mentioning to your care team:

- Raspy voice and throat discomfort — could relate to nerve involvement or other myeloma-related changes
- Facial pressure — bone lesions in the skull or jaw area are worth investigating
- Dry mouth and thirst — may need to be evaluated in the context of your current treatment and kidney function, which myeloma can affect
- Morning worsening — overnight dryness can amplify nerve-related discomfort significantly

Other MyMyelomaTeam members have described neuropathy symptoms in surprising locations, so you're definitely not alone in experiencing this beyond the typical hands and feet.

Please do flag all of these symptoms to your oncologist — the combination deserves a thorough look.

October 6
A MyMyelomaTeam Member

Coconut oil is good for a lot of things; I brush my teeth with it and also use it like a sort of mouthwash.......so Paula....great suggestion. The coconut oil is anti microbial also

October 12
A MyMyelomaTeam Member

I got the sever dry mouth during stem cell transplant. Get a bottle of Biotene. It really helps.

October 11
A MyMyelomaTeam Member

Ted,
When I start feeling too thirsty or nauseous, I know it’s my kidneys, and I’m careful what I eat and I drink only water with lemon or lime. I used to mask the symptoms with ginger, but the nausea did not go away for good. I used to wake up in the morning with back spasms, so now I hydrate all night and it has gone away. Even a few sips helps. In the morning I take 2 heaping teaspoons of Nutritional Yeast for my neuropathy. The International Myeloma Foundation has an article called “Renal, GI and Peripheral Nerves” and makes some recommendations on what supplements to take. There is a whole section on Kidneys. You might want to read it. If you can’t find it, I’ll try to send you the link.
Paula🌹

October 8 (edited)
A MyMyelomaTeam Member

Sorry one other thing you should look for is if your tongue seems to getting bigger. That is a definite sigh of Amyloidosis.

October 7

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