The Medicatio and Vitamins Begin Today Please Advise

[PALS Mike]

I take ABSOLUTELY No meds...

I focus on proper nutrition and supplementation.
I do have a flu shot but since starting glyconutrients (last Nov), have yet to catch a cold (not even the 'sniffles'). With school age boys...That's been d@mn near impossible.

I am the same...Coldness bothers me.

 

[Granny]

How strange.
In the winter, I can not go out in the cold, or my jaws completely freeze up. Last winter I could still speak quite well except when I went out in the cold, then my jaws stopped working. It is interesting to find that others are affected by the cold also.leah

 

[wewillbeatthis]

Geeeezzzz you guys have me thinking that perhaps dad should not take the rilutek... Baclafron has really been helping him so we are not going to stop that but do you think he should stop the other?

As for the vitamins they seem great for him. He too does all the weights and stuff and loves it....

As for the cold he too tightens up in his legs real bad that get so stiff on him... I guess this is another thing with this disease....

Good night all and we will talk again tomorrow...
Jen

 

[geogood]

Some people I know swear by rilutek, the reason I said that I do not use it is because it did come along after some years into this disease. This could be totally different for someone just diagnosed, I dont pretend to be a doctor so will not pass judgement on that. One thing though that I do know is that passive exercise is good, however when muscles are wasted away as in my right leg no amount of exercise will bring them back and in fact will likely cause more discomfort than good. This is a problem with some physio therapists that do not understand the disease, they think that by working the muscles to the max they will regain strengh, not so. I think that what I am trying to say is that what works for one may not necessarily work for others so you have to find some kind of common ground that seems to work for you. This could mean taking the ideas of many and trying them, if it works stick with it, if not throw it out! There are any number of sites where PALS tell what they have tried and not tried (mine being one of those) it is worth a read to see what they have done and if it worked.

Geo.

 

[PALS Mike]

I've posted this info before...

Taken from the Rilutek Site

Over 1,100 patients participated in clinical trials for Rilutek. During the first year of treatment, patients who took Rilutek had a better chance of staying alive compared to patients who took a placebo (sugar pill). However, by the end of 18 months, there was no difference between the Rilutek group and those on placebo. Rilutek is not a cure for ALS, and it cannot give back function that is already lost.

It is the only drug that has been approved specifically for ALS, Rilutek, works by blocking transmission at the glutamate synapse.
If Rilutek extends life, on average, only a couple of months, that would suggest that the excess transmission at the glutamate synapse is a secondary and not a primary feature of the disease.

Just some info I considered before deciding to not take it (potential side effects also a major concern for me).

 

[wewillbeatthis]

I have read what you posted Mike.... According to the doctor he has him on this not to rebuild what is already hurt but to try and stop more from occuring... It seems that there are people on this for years and they don't have any side effects from it... I think everyone is just different like many have told me on this board.... He is going to stay on it for a bit and see what the doctor says at his next appointment...

 

[geogood]

One thing that I did ask my doctor (who incidentally, would not put me on rilutek even if I had wanted to) is does the extra two months or what ever mean a quality two months or a kind of end of life two months. Of course that was and still is a loaded question. He did give me the name of a neurologist who would prescribe it for me if I did want to give it a try. I am still of the opinion that what may work for some will not work for others, and that is in regards to all meds or foods. Kind of makes you wonder if a lot of what happens is in the mind, who knows for sure. I do know that a lot of the people that I have met who are long term survivors have an incredible outlook on the whole situation and perhaps that is more the answer than what they do or take.

Geo.

 

[PALS Mike]

Amen Brutha G!

Mike and yourself are certainly good role models for a positive attitude.

 

[Al]

Geez . Now you guys are making me question my judgement in taking it. I get a new Neuro at the clinic in a couple of weeks so I'll have a chat with him about it.

 

[wewillbeatthis]

HMMMMM!

Al please let me know what your new Neuro says... I am thinking now that dad should come off of it... Actually he is suppose to strat taking it twice a day next week... Do you think we should leave it at once a week... My worry is could this make him worse? I would not want him to take something that could make him worse or speed up the process in any way?

Jen

 

[Granny]

Hi Jen,
I feel for you going through the same dilema as the rest of us as to what meds to take or not to take with ALS. And, how do we know when something is working or not working. I have been on Rilutek for a year now, and have had no side effects. My speech is gone and I have trouble eating, but my large muscles are unaffected. I am very strong and flexible in arms and legs. No twitches, etc. Is that where I would be without Riletek, or would I be worse? Or better? Is it the Riletek that keeps my limbs strong, or maybe the creatine, or some of the vitamins. Who knows. If I was on more vitamins and no MSG or Aspertame, would I be better? Every case of this disease seems to present itself differently. I think some have mentioned that you have to go with your instincts, your doctors advice if you trust him/her. The advice on this forum is great, and the humor is wonderful relief. I live in the boondocks of the Maritimes, so do not get to see Al and Carol and Theresa, etc, but love them anyway! I envy their sense of humor. I admire you for yor love for your Dad and the faith the keeps you strong. Hang in there.
Leah

 

[Al]

Hi Jen. The normal course for Rilutek is 1-50mg tablet twice per day 12 hours apart on an empty stomach. If you trust the Doctor and think he knows what he is talking about then I would take the medication as prescribed. It can't hurt? and if he does notice some side effects that he is not happy with he can always come off it. There are only 2 options. Take it or not. You'll probably find us just about evenly split between who does and who does not. Once again you have to do what you think works for you or in this case your dad. There is a website called Pinpoint Network. you can go there and see their survey results that are updated monthly and see who is taking what and a pile of other questions. Als patients who know about the poll answer once a month about the progress of the disease.

Take care. Al.