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LookingAround 04-25-2018 09:34 PM

Any PLSers on Riluzole?
I have been wondering if Riluzole is often recommended to PLSers since a physician asked me if I had ever considered it. Anyone here on it? Reasons you said yes? Any worries that something about it could kickstart lower motor neuron progression (I feel silly even typing that)?

avnl 04-28-2018 10:26 AM

Re: Any PLSers on Riluzole?
Initially my PALs did not take Riluzole when diagnosis was Hereditary Spastic Paraparesis. With onset of Bulbar and upper extremity changes and change in his diagnosis to PLS, His neurologists recommended taking it though it was with the understanding that it may or may not be helping. He has no side effects from the medication, so he has continued taking it. Has it helped? We do not know. He began his UMN journey almost 14 yrs ago. Currently wheel chair dependent, with significant speech and swallowing difficulties. Spasticity is very pronounced.

ShiftKicker 05-08-2018 09:55 AM

Re: Any PLSers on Riluzole?
I'd like to boost this, just in case it's been missed by someone who has UMN onset ALS or PLS and takes Riluzol.

BobbyRayC 05-08-2018 12:52 PM

Re: Any PLSers on Riluzole?
I don't know what you are looking for but I was ALS, PLS, back to ALS (then prescribed Riluzole) and now UMN dominant ALS. I take it as it has a minimal side effect and it 'may' help somewhat, but I really don't know how we would know. I don't have any worries about it kicking off LMN symptoms but, again, how would we know? I didn't really think any of my personally suspected causes would kick off ALS either.


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