Status
Not open for further replies.

Patty's girl

New member
Joined
May 12, 2006
Messages
5
Reason
Loved one DX
Country
US
State
MI
City
Highland
Dear friends,
My mother is in the advanced stages of bulbar ALS and they are taking her Monday for Botox injections for her arms. Has anyone heard of this before as a treatment? She is going to an ALS clinic in Nevada. They said it could help to give her more mobility of which she has none right now. This sounds very strange and odd to me. Her arms are all swollen and red. Her caregivers are in distress because when they try to move her she is in a lot of pain which is not being relieved by the Ultram meds she is taking. Thank you for any input on this. Patty's girl
 

salma

Member
Joined
May 17, 2006
Messages
17
Reason
PALS
State
Sind
City
Karachi
Hi Dear,

Pls. tell me what is Botox injections? Is it B 12 injection? Actually my father has also in advance stage of ALS. he is almost on bed. did any one hear or experience Stem Cell Therapy? thanks.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Patty. Sorry about your mom. I haven't heard of anyone getting Botox for what you are describing but if she is going to a registered or MDA approved clinic I would hope that they would know what they are doing. Possibly it is an experimental treatment. If it is a private clinic which I believe there are a few around then I'd be asking some serious questions real fast. Not wanting to be sued or anything but from what I've seen and read some of the private clinics have a different agenda than mainstream medicine. Mainly take the money and run. I think you ned to ask more questions.
Salma. The only things I have learned about stem cell therapy has been disappointing.
It holds promise that someday it will help but now it is not working. Don't think of spending your money on it.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Taken from Dr. Koop. com
(HealthDay News) -- Botox is a compound, derived from a bacterium, that is injected through the skin and into facial muscles to reduce lines and wrinkles. If you're thinking about getting Botox injections for cosmetic improvement, the U.S. Food and Drug Administration offers some guidelines.

As Botox only lasts for about four months, repeated injections may be needed to maintain the cosmetic appearance derived from the treatment. As the injections wear off, lines and wrinkles reappear.

According to the FDA, some side effects from Botox injections may include droopiness of the eyelid, flu-like symptoms, nausea and headache. In rare cases, there can be more serious side effects since the treatment is derived from the same bacterium that causes botulism, a deadly illness that makes it hard to breathe or move.

You should never receive Botox if you are or may be pregnant, or are breast-feeding. Tell your doctor if you have problems with nerves or muscles, or are taking an antibiotic.
 

Granny

Distinguished member
Joined
May 18, 2005
Messages
205
Botox for saliva

The website the Skode refers to talks about using botox to lessen the production of saliva, which can be a big problem with people whose tongue, mouth and throat muscles are affected by ALS.
My doctor has suggested it to me, but I have not had it done. It consist of injecting botox into the parotids, the place where the saliva is produced. It will help block the formation of saliva and therefore help control the drooling.
This procedure has nothing to do with slowing the progress of ALS , all it does is stop saliva production.
I don't see how using it in Patty's mothers arms could give her more mobility, but then again, I am not a doctor.
Hugs and prayers,
Leah
 

skode

Member
Joined
May 31, 2006
Messages
19
Reason
PALS
Country
US
State
New Jersey
City
Blackwood
You're correct Leah, I posted too quickly before going out and meant to add for the purposes of saliva management only. Never heard of any other use of botox for ALS. Sorry for any confusion.

Pat
 

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,028
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
Apparently it also has been used to reduce muscle spasms associated with neurological disorders. I assume here that would include spasticity which for many PALS blocks mobility even though the muscles otherwise are sufficiently strong to offer movement. I've heard of it being used but have no experience with it.

http://www.neurologychannel.com/botulinum.shtml
 
Status
Not open for further replies.
Top