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Renza8
27th March 2015, 00:33
Hi all. Further to the great feedback on my first introductory post yesterday, my mum has asked if I can enquire about something on her behalf.

Mum has bulbar onset MND, symptoms of slurred speech since Dec 2013 but she only got a diagnosis 2 weeks ago. She also now has great difficulty eating certain foods & has started choking at times.

Around New Year she thought she had a small cut on the tip of her tongue. It annoyed her & she realised she was rubbing her tongue against the inside of her teeth to try & get rid of the feeling. Unfortunately that sensation on her tongue hasn't gone away, only worsened. It now feels like something in her mouth felt all ' loose' like loose skin. It makes her chew all the time and wears her jaws out , so that speaking is even more worse . She also finds it very draining . She found some relief , first with orabase paste ( disgusting taste ) , then after speech therapist suggested it,Iglu gel . However nothing has cleared it up. When the Iglu wears off it feels like there are all threads of flesh hanging between her teeth . She would just like to have the feeling gone now, and wondered if anyone else suffers in the same way , or has any answers.

Thank you in advance.

marieline
27th March 2015, 02:40
Hello Renza,
This is how it started for me. Your mum will most like be referred to the speech pathologist, some speech therapy if started early is very beneficial.
If she has not started going to the MND clinic, she might look at attending. It is frightening and isolating, i know how she must be feeling. She will learn to get used to the new sensations and learn to adjust to them. I do not believe that there are a specific treatment for the symptoms, although my neurologist did mention botox once.
Best wishes

Renza8
27th March 2015, 08:47
Hi Marieline, thanks for your thoughts. Mums been seeing a speech therapist for quite a while, but sadly neither they or the neurologist can think of what is causing the sensation or how to help. It's driving mum insane, as I'm sure you can imagine! �� I'll look into the Botox for her & fingers crossed that might be a possibility.

Thanks again ��

Candle
27th March 2015, 09:33
Mum had everyone trying to find something" stuck between her teeth". I hadn't realised it was connected to MND. We were trying lots of different types of oral care products. Now I know why none of them worked!

willsandco
27th March 2015, 10:32
Renza. bulbar problems are just so crazy! I bite my inner mouth , well, I just seem to catch it, it gets swollen and then it gets caught more easily. I did have a cut on my tongue some time ago and went to the pharmacist. He prescribed something in a tube especially for the tongue which I put on and it sorted it out. I do talk to my dentist about it and I go for regular checks up and hygienist (tell Mum that is very important!) I sometimes feel as if I have a hair caught somewhere on the upper palate, but there isn't! My tongue seems to have a mind of its own these days. My personal reasoning is that it spent so many hours " yapping" (because I was the noisiest gal on the planet before I lost my voice) that it is reminding me that it is still here! I would recommend Mum talks her concerns over with a dentist. I hope it sorts out - it is so annoying for her. Much love Joycie xx

Renza8
28th March 2015, 23:49
Thanks all xx

marieline
29th March 2015, 08:28
Renza. bulbar problems are just so crazy! I bite my inner mouth , well, I just seem to catch it, it gets swollen and then it gets caught more easily. I did have a cut on my tongue some time ago and went to the pharmacist. He prescribed something in a tube especially for the tongue which I put on and it sorted it out. I do talk to my dentist about it and I go for regular checks up and hygienist (tell Mum that is very important!) I sometimes feel as if I have a hair caught somewhere on the upper palate, but there isn't! My tongue seems to have a mind of its own these days. My personal reasoning is that it spent so many hours " yapping" (because I was the noisiest gal on the planet before I lost my voice) that it is reminding me that it is still here! I would recommend Mum talks her concerns over with a dentist. I hope it sorts out - it is so annoying for her. Much love Joycie xx
Renza, i was about to mention the hair in the palate sensation but Joycie covered that. After a while your mum will realise that they are only sensation due to the involvement of the lingual and facial nerves. Having a good dentist, she trusts, who understand her conditions also make a load of difference. Best wishes Marieline

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