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ruby ben

Active member
Joined
Jan 17, 2006
Messages
82
Reason
PALS
Diagnosis
11/2010
Country
CA
State
B. C.
City
Vancouver (Surrey)
Hi - I have started this drug and am trying to learn about it. I read that one characteristic of Rilutek is that it inhibits the release of glutamate in the brain. Excess glutamate kills brain neurons.
I have looked at an article on glutamate - American Journal of Clinical Chiropractic, April 2005, Glutamate/Aspertame - Pain and your Brain. Most of the article is over my head but I am wondering if all the years I used products with aspartame to control weight has added to my current problem. It couldn't be that simple! All you brains out there - help me out in simple language. Thanks...................ruby from vancouver (surrey)
 
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hwbissegg

Member
Joined
Jul 1, 2006
Messages
14
Reason
PALS
Country
US
State
Utay
City
Salt Lake City
Hi Ruby,
When I realized that I had neurological problems I also started worrying about all of the diet drinks I've been drinking. Aspartame is also in SO many of the low calorie foods that we eat. The reports on it seem convincing, but I honestly don't know. I decided to give it up and see what happened a few months ago. All that happened was that I missed my diet coke and I gained five pounds. I realize that it would probably take longer than a month to notice any differences if there would be any, but I just couldn't deal with the weight gain. I mean it's hard enough to control your weight when you can't get a good work-out, it just wasn't worth it to me!
 

buffalooney

New member
Joined
Aug 8, 2006
Messages
4
Reason
PALS
Country
IN
State
preet vihar
City
NEW DELHI
When my dad passed away, I was so very depressed..that with time, my nerve cells got damaged. I was very irritated, and got even hypertension..when I consulted a neurologist, he advised me to take rilutek which is meant to prevent nerve cells from damaging. I started taking it, and I dont know if it has double effects, but it helped me to feel less depressed at the same time..I bought it from a reputed online pharmacy and I'm stil using it. Take care you all.
 
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gilly

Active member
Joined
Jul 24, 2006
Messages
56
Country
US
State
NY
City
New York City
rilutek and smoking

my aunt is a smoker... has been for years. when i was talking to her last night i mentioned (gently) that maybe it's time to quit the "smokes"... she said she heard that smoking enhances the effects of rilutek. obviously i am not going to press her on the one thing she seems to still get pleasure from... but i would love for her to quit smoking. is she pulling my leg about the rilutek and smoking? i can't believe i am even asking this question!

anyway, she went to the speech pathologist yesterday and loved her. i was so happy to hear some positive energy in her voice. she said she's going to buffalo new york to be fit for some sort of mouth piece that strengthens the palatte while speaking to make it better? we'll see. i hate the thought of not hearing her voice anymore.

love nicole
 

ruby ben

Active member
Joined
Jan 17, 2006
Messages
82
Reason
PALS
Diagnosis
11/2010
Country
CA
State
B. C.
City
Vancouver (Surrey)
Nicole

Hi - you stated that you would hate to loose your Aunt's voice. There is a devise to record certain statements that you can use later when she has lost her voice. I am sure the members on here can tell you all about it..................ruby from vancouver (surrey)
 

Farmgal from ND

Active member
Joined
Apr 21, 2008
Messages
30
Reason
PALS
Diagnosis
06/2005
Country
US
State
North Dakota
City
Turtle Lake
My Dr. wants me to go on Rilutek and from what Ive read so far it seems like your better off without it. Can anyone help me with this .
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
It's a duckshoot so to speak. Some take it here, some think it's poison. I believe most of the people here that can afford it do take it. Try www.drugs.com and read up on it.
AL.
 

Kevinski

Active member
Joined
May 23, 2006
Messages
70
Reason
PALS
Country
CA
State
Alberta
City
Calgary
ritulek

Hi Ruby I have been taking Lithium and ritulek for 2 months so far no negative side effects and have no further progression with the disease ao who knows.As for aspartame use ,I asked my neuro guy about that and he said a person would have to ingest gallons of the stuff to do damage
 

Sammantha

Senior member
Joined
Aug 11, 2007
Messages
501
Country
Uni
State
NC
City
Newport
Aspartame

I thought i would write something about it, do you know that i turns into a toxic chemical when it is exposed to heat? Look on the side of your can and there will be this big word that is red and starts with P.... You never know, those cans are on unrefrigerated trucks before they come to the stores. The constant heating and cooling effect changes the chemical make up of asparatame. I tried drinking diet drinks to loose weight many years ago and when i looked up that funny word on the can, i quit drinking them ASAP.. Sugar may make you fat but it is natural, anything natural is always the better thing.
 

BUBBLES

New member
Joined
Sep 15, 2008
Messages
1
Diagnosis
09/2008
Country
US
State
MN
City
CAMBRIDGE
Als

:-dhi My Name Is Bubbles. They Say My Dad Has Als. The Doctor Told Him About 1 1/2 Years Ago That He Has It. But He Went To 3 Other Doctors To Make Sure. In That Time Fraim He Can Not Use His Left Arm Any More. I Want To Fight This. I Might Be In Denial And Part Of Me Thinks That He Dont Have It. But I Want To Know Everything About It. I Have Studyed On Line And Alos The Libuary Books Has Helped. I Want Him To Start Taking Coq10 But He Thinks It Would Hurt Him Cause He Is On Riluzole Right Now. They Say Taking This Med. Will Give Him 2 More Months. For $900.00 A Month What Does 2 More Months Mean? To Stop It Or Slow It Down. I Enjoy Every Day That I Am With Him. I Am Having A Hard Time Sleeping And Eating And Even Thinking Cause All I Can Do Is Think Of This World With Out Him And It Would Be Gray And Sad. I Want This Sickness To Go Away And Stop . I Want Everyone Out There That Has It To Get Better. They Can Put A Man On The Moon But They Cant Figure This Sickness Out.
Every Night I Pray For All Who Have This Sickness. 3 Years Ago The Doctors Told My Mom She Was Alizemers And Now She Is In An Old Focks Home. Im Lost About All Of This. If Anyone Out There Can Help Me I Would Love It.
God Bless You All!
Bubbles:-d
 

mybrother

Member
Joined
May 27, 2008
Messages
11
Reason
Loved one DX
Country
US
State
il
City
moline
All I can say is hang in there. This disease is very hard to accept, considering all the other diseases out there. I am sorry to here about your mother and alzhiemers. The only consolence I can give you is your mother will not no what is going on. Your Father on the other hand will suffer the disease process of ALS. Rilutek is very expensive they say it gives you maybe 2 months. What is the price of 2 months. Good luck to you and your family. I understand your pain and grief. Pray for a cure.

Mary
 

KellyandKay

Member
Joined
Aug 19, 2008
Messages
12
Reason
Lost a loved one
Diagnosis
9/2004
Country
US
State
OK
City
Caddo
If you can afford Rilutek, I recommend taking it. So far, it is the only medication that has been demonstrated to help PALS in clinical trials. Until the researchers can find out what causes ALS, speculation about chemicals like aspartame is just that -- speculation. The following information is for those who are undecided about taking Rilutek. Riluzole/Rilutek was shown during a clinical trial to have the potential to lengthen life in ALS patients (see: http://www.ncbi.nlm.nih.gov/pubmed/8676624 .) In the referenced study, 959 patients were included. They were randomly assigned a placebo, or riluzole in amounts of either 50, 100 or 200 mg/day. The primary criterion measured was survival without a tracheostomy. A follow-up taken 18 months after completion of treatment showed that 50.4% of placebo-treated patients were alive without tracheostomy. By comparison, 55.3%, 56.8%, and 57.8% of the patients given 50, 100 and 200 mg/day of riluzole, respectively, were alive without tracheostomy. Functional measurements (muscle strength, functional status, respiratory function, patient's assessments of fasciculation, cramps, stiffness, and tiredness) were recorded in the study, but no differences could be found between placebo-treated and riluzole-treated patients. The most common adverse reactions were asthenia, dizziness, gastrointestinal disorders, and rises in liver enzyme activities. The reactions increased with dosage level.
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
rilutec

I think I am one of the lucky ones...I was given riltec, riluzol as soon as I was diagnosed, and all I can say is that it darn well worked for me...cut down the fascilations a huge amount...I am also lucky in that in the UK...IF your local health care will provide it, then it only costs about $10 per month, so I get it for that...So far no bad reactions, although I have to go for my second liver function test next week...first one 3 months ago was fine....as for any other chemicals....I am a firm believer that something in my ...normal diet...set this off....all the chemicals they add to stuff. Never have drunk diet drinks so cant blame those.... I think it must be like a food intolerance or allergy, some of the rubbish they put in food affects some people and not others...
On that note...I am a frequent visitor to florida as we have a home there, and visit a local warehouse club, where we buy members mark allergy pills...my husband started using them for hay fever, then we found them good as a mild sleeping pill. Just recently I noticed that when I take them they seem to improve the effect of the riluzole... when I looked at the ingredients, they contain some metal sounding things...I am going to send a copy of the ingredients to my neuro to check out......I was told by one of the top uk neuros, that riluzole COULD extend you life by up to 20%...so if you take it early when you may have been given 3 years, it is a lot more than if you only get 20% of an anticipated 6 months....but I have come to the conclusion that none of the doctors really know that much for sure anyway.
jennifer51
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, Jennifer ...

allergy pills...my husband started using them for hay fever, then we found them good as a mild sleeping pill. Just recently I noticed that when I take them they seem to improve the effect of the riluzole

That's very interesting about the allergy pills enhancing the riluzole. Let us know what your neuro says about them. It sounds like you're doing pretty well ... hope so! Glad the riluzole is working!

Take care.
 
Joined
Oct 9, 2008
Messages
14
Reason
PALS
Diagnosis
06/2008
Country
UK
State
ARMAGH
City
ARMAGH Northern Ireland
Hi Jennifer, Im based in Northern Ireland and was recently diagnosed with MND i am now been sent to another consultant as Iam so young in his opinion. However he has prescribed Riluzole which I have been taking for a bout 2 weeks now.
How long did it take you to get a full diagnoses? and how quickly did you feel the effects of the drug? have you explored the possibility of the Lithium Carbonate?
Sorry for all the questions but Iam completely frustrated by the way these consultants work it seems that they are more interested in following proceedures than tackling the disease.
Anyway if you get a chance I would appreciate your views on the above.
All the best
Alastair
 
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