Re: Hello, I'm a new member--Question on Medication

[Guest guest]

Thank you Dale. It's great to have found this family!

I actually do have a question...my doctor wants me to try taking

Rilutec, which is the drug used for ALS. She bases her suggestion on

the fact that they are both motor neuron diseases, and that PLSers

might benefit as well.

Has anyone else tried it or been advised to try it?

Thanks!

Liza

> Welcome to the family of great people! We all know what you are

going

> through and so ask questions. We all were " recently diagnosed " at

one time

> and know the loneness.

>

> dale

> Hello, I'm a new member

>

>

> >

> >

> > My name is Liza, I am 39 years old, and I was diagnosed with PLS

> > about 1 1/2 years ago. I would have ventured to find a support

group

> > earlier, but since I was diagnosed, I've had to deal with a

barrage

> > of losses on top of the PLS shocker. Finally, I'm coming out of

the

> > fog and am looking for a way to improve my outlook on the future.

> >

[Guest guest]

Liza,

This is just my feeling and the reason why I don't take Rilutek or any othe

drugs. My brother was DX in 1996 with ALS and began taking this drug. He also

did other trials as well. I don't know if it was the rilutek or the others but

I saw him progress rather quickly. When I began having syptoms after a 2000

traumatic surgery, it seemed the nuero wanted to try some drugs as well. Well I

did for a very short time and found that if I kept taking thme it wouldn't be

long before I was permenately in a chair. Our conclusion was, none of these

were going to cure me. It only treats the symptoms. Quality of life was more

important them quanity. Drugs can destroy so much more in trying to reduce or

settle symptoms. Since the drugs made me worse, we decide to put my life in Gods

hands. Beside, he is the only that CAN control when my time is up, what my

time will be like, so why not trust him instead of the doctors. Between God and

me we know about my body, health and attitude better then any doctor who spends

10 minutes with you and knows diddly about you. I am one of the unfortunate

ones that has little to no insurance. Ten years ago I had a wonderful GP that I

had been with for 16 years. Once we moved, finding a doctor of such in this

town has been impossible. Different places, different people, different ways.

We put our faith in God and if by chance some day a doctor who will help and

understand might come along, we would check it out. Unitl then I am not about to

take anything with the side effect that drugs for ALS or PLS can produce.

Since it is more likely then not the drugs used to save my life is what created

the disease. Before my surgery I led a somewhat normal life. Now a week or

month I don't fall is a good thing. I still walk, very slow to keep my balance.

I just wanted to share my experience with the drugs so that you can make an

informed and comfortable choice with what is available to you. That is why this

group is so important. We can share, express, exchange, vent all to the

better of each of us and in our own ways.

Take care,

[Guest guest]

Hi Liza: My first dx was ALSand I was put on rilutek. A few monhs

later, another neurologist said I had PLS. We won't really know

until the next emg in May.However, i decided to stopRilutek ($804

per month!)but after a month foound that my legs were weaker, so I

strted again. If you have drug coverage or can afford the cost, I

would take it. Just get a n RX from y our neuro.

Edith

> > Welcome to the family of great people! We all know what you are

> going

> > through and so ask questions. We all were " recently diagnosed "

at

> one time

> > and know the loneness.

> >

> > dale

> > Hello, I'm a new member

> >

> >

> > >

> > >

> > > My name is Liza, I am 39 years old, and I was diagnosed with

PLS

> > > about 1 1/2 years ago. I would have ventured to find a

support

> group

> > > earlier, but since I was diagnosed, I've had to deal with a

> barrage

> > > of losses on top of the PLS shocker. Finally, I'm coming out

of

> the

> > > fog and am looking for a way to improve my outlook on the

future.

> > >

[Guest guest]

I was told by my neuro that that medication was my last resort because it

messes up the liver

Re: Hello, I'm a new member--Question on Medication

Thank you Dale. It's great to have found this family!

I actually do have a question...my doctor wants me to try taking

Rilutec, which is the drug used for ALS. She bases her suggestion on

the fact that they are both motor neuron diseases, and that PLSers

might benefit as well.

Has anyone else tried it or been advised to try it?

Thanks!

Liza

> Welcome to the family of great people! We all know what you are

going

> through and so ask questions. We all were " recently diagnosed " at

one time

> and know the loneness.

>

> dale

> Hello, I'm a new member

>

>

> >

> >

> > My name is Liza, I am 39 years old, and I was diagnosed with PLS

> > about 1 1/2 years ago. I would have ventured to find a support

group

> > earlier, but since I was diagnosed, I've had to deal with a

barrage

> > of losses on top of the PLS shocker. Finally, I'm coming out of

the

> > fog and am looking for a way to improve my outlook on the future.

> >