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TOPIC: Swallowing

Swallowing 1 year 11 months ago #3841

  • bectongirl
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Hi all
I have had cervical dystonia for five years and am receiving Botox treatment which is very effective. Throughout having this illness,even before the Botox treatment, I have had problems swallowing and have to be very careful about what, when and how I eat. I drink a pint of fluid with every meal and cannot eat dry things, which get stuck in my throat. About a dozen times in the last five years , the food has come out again! Very distressing especially in a restaurant!
My consultant says that he has never known this liked to dystonia, only to Botox injections. I have also experienced that kind of paralysis, but this is not the same. It is continuous and I have always got to be on my guard.
Has anyone else had similar experiences?
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Swallowing 1 year 10 months ago #3858

  • Tim G
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Hello, Ask your consultant whether your dystonia is now affecting your mouth/ tongue. I have mandibular dystonia and consultant not sure if it is my jaw muscles or tongue, as tongue can push food out. I too have difficulties eating ( and speaking) and food stays on my lips as my mouth does not open fully when eating and also I think food comes out as bit. He has observed that my tonguesdoes come out sometimes when speaking- something I am unaware of. My I have to eat with water as you say and a kitchen towel at the ready . Dry food gets stuck in my throat and I do cough a lot but do not choke. This is, as you point out not good for eating out. I am having botx every month at present in my tongue , with no effect at moment. Other muscles in the face have been targeted but again no effect. It is all very dispiriting as nothing seems to work. Still, not got to end of line yet.

All the best Tim
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Swallowing 1 year 10 months ago #3861

May I ask what is your consultants name ? My consultant said the same thing about the swallowing that I should have difficulty and some time I have difficulty in getting my words out
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Swallowing 1 year 10 months ago #3862

  • Tim G
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Hello Not sure if the society will allow names. however the chap administering the botoxin is not the neurologist , but a neurophysiologist referred to by the neuro, who I think specialises in the face. His name is Dr Catania at UCL national hospital in London. I have seen a few different neurologists now who all come up with same diagnosis. The problem is what can done about it. I know of people who respond very well to botox for this type of dystonia. However Dr C says face musclature is complicated. Botoxin can temporaliy effect swallowing, but this is not the case with me. It just does not have any effect up to now.
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