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aannddy

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Joined
Dec 18, 2008
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Loved one DX
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09/2008
Country
PRC
State
Beijing
City
Beijing
Hi All,

This is Andy from China saying hello to everybody. My mom was diagnosed with ALS two motn ago(Sep.2008), She has been despaired since then, I'am very nervous about her. Since our financial situation, We do not have much money on supporting the only impactful medicine(Maybe) "Riluzole" which the docotor advised to us, it costs 4000RMB(about 600 US dollars) in China. So we are trying for the traditional Chinese medicine which is much cheaper. But my mom's situation is getting worse very fast.
So The first thing I'd like to know is that what is the Unit cost for "Riluzole" in United states. I also heard that The biggest 2008 medical progressing is ALS. It there any medicine provided to cure this disease?
Thank you all.
 

Mr. Bill

Member
Joined
Nov 24, 2008
Messages
25
Reason
PALS
Diagnosis
09/2004
Country
US
State
MN
City
Hometown
Andy,

I had taken Rilutek for two years and I paid about $!014.00 for a month's supply.

Hope this helps.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
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Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, Andy ... I'm so sorry for your mom's diagnosis. There is no cure (yet) for ALS, but Riluzol is known to prolong life by several months.

There are other medications that can help control your mother's symptoms. She might experience outbursts of emotion ... crying, or laughing, or anger. These are not reflections of her emotional state ... they are part of ALS, and they are very embarrassing when they happen around strangers. These can be controlled with medication, which will make her much more comfortable.

Another symptom she might experience is excess saliva, which can also be controlled with medication, and there are also medications to control muscle cramps or spasms.

I'm sure the doctor who advised Riluzole will know about these Western medications ... and they are not nearly as expensive as Riluzole ... and I'm sure that traditional Chinese treatment will help her comfort level, too.

Best of luck to you and your mother.
 

aannddy

New member
Joined
Dec 18, 2008
Messages
6
Reason
Loved one DX
Diagnosis
09/2008
Country
PRC
State
Beijing
City
Beijing
Reply to Mr Bill

Andy,

I had taken Rilutek for two years and I paid about $!014.00 for a month's supply.

Hope this helps.

Hi Mr bill

Thanks for your informations. It seems that Riluteck is much expensive in US? Or you've taken other medicine?
 

aannddy

New member
Joined
Dec 18, 2008
Messages
6
Reason
Loved one DX
Diagnosis
09/2008
Country
PRC
State
Beijing
City
Beijing
Reply to BethU

Hi, Andy ... I'm so sorry for your mom's diagnosis. There is no cure (yet) for ALS, but Riluzol is known to prolong life by several months.

There are other medications that can help control your mother's symptoms. She might experience outbursts of emotion ... crying, or laughing, or anger. These are not reflections of her emotional state ... they are part of ALS, and they are very embarrassing when they happen around strangers. These can be controlled with medication, which will make her much more comfortable.

Another symptom she might experience is excess saliva, which can also be controlled with medication, and there are also medications to control muscle cramps or spasms.

I'm sure the doctor who advised Riluzole will know about these Western medications ... and they are not nearly as expensive as Riluzole ... and I'm sure that traditional Chinese treatment will help her comfort level, too.

Best of luck to you and your mother.

Hi BethU.

Thank you very much for your kindly detailed description about how to make my mom reducing pain, I'll ask our doctor to prescribe the relevant medicine for certain symptom.
In the following 2-3 years(I hope this time will last as longer as I wish), I'm afraid I will need you & everyone's help in this forum. I would like to thanks everybody in advance for the trouble in the future, and I also wish good luck to every ALS or MND patients in this forum & all over the world.
Thank you again!BethU
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Welcome to the Forum aannddy. I am sorry about your mom but hope we will be able to offer advice and support to you.

AL.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
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Los Angeles
Hi, Andy ... please keep in touch with us, and let us know how your mother is doing. I'm going to be trying acupuncture next month as I believe that can be effective for symptom relief.

Best wishes for the new year.
 

aannddy

New member
Joined
Dec 18, 2008
Messages
6
Reason
Loved one DX
Diagnosis
09/2008
Country
PRC
State
Beijing
City
Beijing
An coincidence!

Hi, Andy ... please keep in touch with us, and let us know how your mother is doing. I'm going to be trying acupuncture next month as I believe that can be effective for symptom relief.

Best wishes for the new year.

Hello BethU,

Merry Christmas to You. It was an amazing Coincidence which my mom will go to try the Acupuncture treatment too! We found an advertisement from TV that the clinic which we plan to visit is well known in China. Hope it can cure A.L.S!
will keep you update later!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
aannddy. Acupuncture will not cure ALS. If that clinic says it will, they are liars and crooks. Find another one. Acupuncture can make the symptoms feel better on some people but is not a cure. Sorry.

AL.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, Al and aannddy ,,, I know that there is no cure for ALS (yet), but I have had acupuncture for other conditions in the past, and know from personal experience that it can help symptoms. I am very curious to see if it will have an effect on such things as excess saliva, etc.
 

aannddy

New member
Joined
Dec 18, 2008
Messages
6
Reason
Loved one DX
Diagnosis
09/2008
Country
PRC
State
Beijing
City
Beijing
Dear Both,

I delivered my Mom & Dad to the Clinic this morning & just sitting in the office. :razz:

The Clinic did not say they can cure ALS, Just a wish of mine. You know I still can not believe my mother have this disease. Hope the acupuncture have relieve my mom's symptom.
BTW, The advertisement said they have the very thick acus, it looks much thicker than the regular one.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
An honest man

I e-mailed an acupuncturist who had been recommended to me, and he replied, "ALS is not curable, and the symptoms are very difficult to treat."

He said that he would need proof of the diagnosed, because of the mimic diseases, and he would need to develop a treatment plan with me.

He also sent me some URLs dealing with ALS, so that I would understand what I was up against, which I thought was a very nice gesture.

He also sounded rather expensive, so I asked him for a ballpark figure. We'll see what happens ... but I was glad to find an alternate medicine person who was honest and up-front, rather than promising the moon. :p
 
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