Old 04-25-2018, 08:34 PM #1 (permalink)
New Member (Say Hi)
 
Join Date: 2016
City: Dallas
State: TX
Country: US
Interest: I have been diagnosed with UMND/PLS.
Posts: 5
LookingAround is on a distinguished road
LookingAround LookingAround is offline
New Member (Say Hi)
Join Date: 2016
City: Dallas
State: TX
Country: US
Interest: I have been diagnosed with UMND/PLS.
Posts: 5
LookingAround is on a distinguished road
Default 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)?
LookingAround is offline   Reply With QuoteReply With Quote
Old 04-28-2018, 09:26 AM #2 (permalink)
Member
 
Join Date: 2011
City: warren
State: RI
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 151
avnl is on a distinguished road
avnl avnl is offline
Member
Join Date: 2011
City: warren
State: RI
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 151
avnl is on a distinguished road
Default 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.
Anna
avnl is offline   Reply With QuoteReply With Quote
Thanks from
LookingAround (04-28-2018)
Old 05-08-2018, 08:55 AM #3 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,476
ShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant future
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,476
ShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant futureShiftKicker has a brilliant future
Default 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.
ShiftKicker is offline   Reply With QuoteReply With Quote
Old 05-08-2018, 11:52 AM #4 (permalink)
New Member
 
Join Date: 2016
City: Headland
State: Al
Country: USA
Diagnosed: 11/2016
Interest: I have been diagnosed with ALS.
Posts: 20
BobbyRayC is on a distinguished road
BobbyRayC BobbyRayC is online now
New Member
Join Date: 2016
City: Headland
State: Al
Country: USA
Diagnosed: 11/2016
Interest: I have been diagnosed with ALS.
Posts: 20
BobbyRayC is on a distinguished road
Default 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.

Thanks
Ray
BobbyRayC is online now   Reply With QuoteReply With Quote
Thanks from
LookingAround (05-10-2018)
Reply

Tags
progression, riluzole


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Riluzole Sam63 General Discussion About ALS/MND 21 09-17-2015 03:18 PM
Riluzole st123 General Discussion About ALS/MND 47 03-12-2012 02:41 PM
Checking out the PLSers Huskermom1 General Discussion About PLS 11 03-28-2011 04:38 AM
Look at the Map of PLSers Geo General Discussion About PLS 6 09-19-2009 03:38 PM
what type of massage is good for PLSers sral General Discussion About PLS 7 02-08-2009 01:40 PM


All times are GMT -5. The time now is 04:02 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016