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Rothcosgrove

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Joined
Feb 12, 2014
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PALS
Country
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-Japan
City
Tokyo
This morning (Japan Time), I typed in the title "ALS and nausea" and I was taken immediately to a Sarah who had asked the same question. Unfortunately it was posted in 2011. Much like Sarah my nausea didn't start until a month after I started with rilutek. I'm not scheduled to see my doc for another blood test until 3/17 but --- after reading the exchanges re Sarah's situation, I think I better get myself to the doc before March.
I'm glad that I found this site. Like Sarah was at that time (2011), I am also "a newbie".
 

Barbie

Extremely helpful member
Joined
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Diagnosis
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Country
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That is the good thing about this forum--you can almost always find answers to any questions you have. let us know what happens with the doc.
 

affected

Guru status reached
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05/2013
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Rilutek can be rough on the liver, so after a month your liver might be trying to tell you that it's not so happy. So do get your doctor to check you over and see if it is related or not.

Glad Sarah helped you out :)
 

kptucker

New member
Joined
Feb 22, 2014
Messages
2
Reason
CALS
Diagnosis
02/2013
Country
Uni
State
AL
City
harvest
After my husband was on rilutek for about a month the nausea was terrible. He tried for about a month to deal with it and could not, it was not worth giving up his quality of life to take it, so he stopped.
 

Rothcosgrove

New member
Joined
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Reason
PALS
Country
JA
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-Japan
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Tokyo
My apologies for the delay in thanking all of you for your notes but --- let's chalk it up to my lack of computer skills, OK? Didn't know how to get back to you --- and --- to complicate matters, I forgot my password. Sure do appreciate the input. I know I'll have more questions in the future, so I do look forward to your suggestions. The doctor, by the way, took me off rilutek immediately. Am in the ole "wait 'n see mode" till the next blood test on 3/17.
A thousand thanks,
Jack in Japan
(I never thought that "Rothcosgrove" would be used as my name! Again, computer illiteracy, obviously. Sorry about that.)
 

affected

Guru status reached
Joined
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Messages
13,312
Reason
Lost a loved one
Diagnosis
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Country
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I dunno, seems like a good name to me :)

Rilutek isn't any magic drug, so if it's messing with your body you are better off it. I'm glad you went and checked with your doctor.
 

barneyswife

Distinguished member
Joined
Jan 10, 2014
Messages
224
Reason
CALS
Diagnosis
08/2013
Country
CA
State
b.c.
City
magna bay
Great advice Tillie, the only magic drug for ALS is love. Someday there will be a magic drug and ALS will no longer be the monster it is now. Until then love, caring and compassion with a good dose of empathy are the only proven winners we have.
Oh yeah almost forgot, lots of pureed homemade soup and smoothies!
Hugs
Linda
 

FSHolbrook

Distinguished member
Joined
Oct 14, 2013
Messages
216
Reason
PALS
Diagnosis
09/2013
Country
US
State
ND
City
Fargo
Hi Linda, I could not have said that better you are spot on. :)

Rick
 

Tx Daddy's Girl

Distinguished member
Joined
Jun 2, 2013
Messages
137
Reason
Loved one DX
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We weren't given Rilutek - my neuro said it wasn't worth the cost given the supposed benefits. We never found anyone it helped much.
 
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