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renza8

New member
Joined
May 19, 2015
Messages
3
Reason
Loved one DX
Diagnosis
03/2015
Country
UK
State
Bucks
City
High Wycombe
Hi all, I've just joined from the UK. Mum was finally diagnosed with bulbar MND this March, having had deteriorating slurred speech since Dec 2013. One 'symptom' she is really struggling with is the sensation of a fine cut or hair being on the top of her tongue. This started suddenly 5 months ago. None of her MND team have encountered this problem before & can't offer any advise. This 'feeling' is sending her crazy, as she constantly rubs her tongue to try & get rid of it, therein making her mouth sore & jaws ache. The only relief she gets is either going to sleep, or brief respite rubbing ulcer gel on the area to form a layer on her tongue, which she then proceeds to rub off by pushing her tongue against her teeth & guns again, without even thinking about it. She finds the feeling is also eased slightly when eating & drinking. Mum is not one to complain & has always just got on with things, but this constant sensation is really having a terrible effect on her.

I would love to hear if anyone has experience with this type of problem & if there is anything to ease it?

Thank you for taking the time to read my waffle!

Kerenza 😃
 
Sorry to welcome you here Kerenza.

My Chris had bulbar onset and never had any kind of sensations like you describe. It would drive me batty too. Can you talk to doctor about some anaesthetic spray that you may be able to put a tiny squirt on the tongue.
 
There are the topical sprays, but they are likely to wear off. If this is neuropathic, possibly low-dose gabapentin will help. It comes in a wide dosing range so certainly worth trying.

Another option, sounds weird I know, would be to try a counter-irritant. Same principle as capsaicin for pain. I'm not saying chili peppers, but depending on her tastes, you could try pineapple, citrus, hot sauce and/or something w/ vinegar but mild like Worcestershire sauce. I would put some on the spot and try to keep it there for a while. There are also gargles that if she can hold in her mouth for longer, might help.
 
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