Sign-in to Ask A Doctor - 24x7
OR
Sign in with Google
Suggest Remedy For Difficulty In Swallowing In A Person With Motor Neurone Disease
Question: My fd daughter has been diagnosed with MND 3 years ago. She is in her early 50's and is now unable to do anything even swallowing is difficult, her speech is slowly disappearing. This drug you were mentioning ßorry cannot remember name but starts with an R is it available in UK, Is it possible to give a rough idea of how long she could live
Brief Answer:
Read below
Detailed Answer:
I read your question carefully and I am sorry about the situation you are in. Motor neurone disease is one of the most difficult conditions to deal with, with little success in treating it.
The drug you are thinking of is Riluzole marketed under the brand name of Rilutek in the UK, produced by Aventis Pharma.
However it's efficacy is really limited. When started at the time of diagnosis it can prolong life expectancy in total about 3-6 more months, but nothing more than that, doesn't stop the progression. At this stage your daughter is at, after 3 years with bulbar involvement (swallowing and speech functions) I do not think it is of much use.
As for an idea of how much more is expected the answer is a little difficult. She is already past the average survival from the time of the diagnosis, which is about 2 years. I would say it is a question of roughly 6 months once there is bulbar involvement, tough to say though, as death usually comes due to secondary complications such as respiratory infections in the setting of malnutrition.
I remain at your disposal for other questions.
Read below
Detailed Answer:
I read your question carefully and I am sorry about the situation you are in. Motor neurone disease is one of the most difficult conditions to deal with, with little success in treating it.
The drug you are thinking of is Riluzole marketed under the brand name of Rilutek in the UK, produced by Aventis Pharma.
However it's efficacy is really limited. When started at the time of diagnosis it can prolong life expectancy in total about 3-6 more months, but nothing more than that, doesn't stop the progression. At this stage your daughter is at, after 3 years with bulbar involvement (swallowing and speech functions) I do not think it is of much use.
As for an idea of how much more is expected the answer is a little difficult. She is already past the average survival from the time of the diagnosis, which is about 2 years. I would say it is a question of roughly 6 months once there is bulbar involvement, tough to say though, as death usually comes due to secondary complications such as respiratory infections in the setting of malnutrition.
I remain at your disposal for other questions.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
I wonder why XXXXXXX Hawkin has survived as long? Do you have any thoughts that may help my daughter? She is very obstinate. determined.and of course as XXXXXXX is her only child she lives for him, especially with all his problems.
Many thanks for your quick reply and your kind words.
XXXXXXX Emmerson
Many thanks for your quick reply and your kind words.
XXXXXXX Emmerson
Brief Answer:
Read below
Detailed Answer:
Yes XXXXXXX Hawking is an exceptional case. Of course I am not personally acquainted with his details, but there are cases where progression is a little slower. Why is that .... since it's a disease which cause and origin we still do not know well, that means it can't be said why in some people it progresses at a different speed.
However in Hawking's case, apart from a milder form, it is the case of him getting the best supportive care as well. He doesn't have much motor function left, only the tip of his fingers. He doesn't feed or breath naturally, breaths through a tracheostomy tube, fed through a gastrostomy tube. As I said before death doesn't come through the disease itself, but due to respiratory and malnutrition complications. Hawking has had the best means and a whole staff around him to prevent those complications (and yet he has risked death due to pneumonia himself as well).
So I am sorry but I am afraid I do not have any useful thoughts. I hope her case is a milder one, but we do not have any means of predicting that apart from the progression speed and the current stage, when swallowing is involved it is the time to start fearing complications.
Read below
Detailed Answer:
Yes XXXXXXX Hawking is an exceptional case. Of course I am not personally acquainted with his details, but there are cases where progression is a little slower. Why is that .... since it's a disease which cause and origin we still do not know well, that means it can't be said why in some people it progresses at a different speed.
However in Hawking's case, apart from a milder form, it is the case of him getting the best supportive care as well. He doesn't have much motor function left, only the tip of his fingers. He doesn't feed or breath naturally, breaths through a tracheostomy tube, fed through a gastrostomy tube. As I said before death doesn't come through the disease itself, but due to respiratory and malnutrition complications. Hawking has had the best means and a whole staff around him to prevent those complications (and yet he has risked death due to pneumonia himself as well).
So I am sorry but I am afraid I do not have any useful thoughts. I hope her case is a milder one, but we do not have any means of predicting that apart from the progression speed and the current stage, when swallowing is involved it is the time to start fearing complications.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Answered by
Get personalised answers from verified doctor in minutes across 80+ specialties
