I'm just curious about people's use of Riluzole.
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Suefromwakey Riluzole is routinely prescribed for people with a PLS diagnosis, Sue, so if Albert wants to take it, he shouldn't be stopped, unless there's a medical reason. I'm sure you know that many with PMA unfortunately progress to ALS over time. xโDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
โ
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I don't take it.As you know I go to the same clinic as your husband, Albert , Sue. I was originally told my MND was ALS but after a second opinion and repeat EMG I was told that at present it was PMA as there was no evidence of upper motor neurone involvement. Apparently riluzole has no impact on PMA. I was told I could take it if I felt strongly about it.
I know that PMA can develop into ALS and I was offered regular tests, although surprisingly they're not my favourite thing. I have a clinic appointment soon so I'll put it on my list of things to discuss.
Love Debbie x
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Hi Gary ,
I have chosen to stop taking it and saw my neurologist today who understood my rationale for my decision.I guess this is a personal decision that people choose to take it or not.
I certainly would not want people on this forum to be influenced in any way by my decision.
I hope people way up the pros and cons and read the research, or talk with their neurologist and then make their informed and personal choice whether to take riluzole or not.
Best wishes
Mary
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Thanks for taking the trouble to vote or comment. I thought it might be interesting, particularly comments from people who've stopped taking it. I frequently ask myself why I'm taking it, especially when we've both had a stressful day. I see the distress that my deterioration causes Louise every day and wonder why I would want to prolong that.Each day is made easier with a bit of humour.
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Originally posted by Suefromwakey View PostConsultant said to my husband he couldn't see the point of taking it, but then again he has PMA and not ALS so perhaps theres a different need?
Sue
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Originally posted by GaryM View PostThanks for taking the trouble to vote or comment. I thought it might be interesting, particularly comments from people who've stopped taking it. I frequently ask myself why I'm taking it, especially when we've both had a stressful day. I see the distress that my deterioration causes Louise every day and wonder why I would want to prolong that.
RichardRichard
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Originally posted by matthew55 View PostI'll say it again, I don't want to extend my life as it is at present. ๐Each day is made easier with a bit of humour.
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