The Medicatio and Vitamins Begin Today Please Advise

[wewillbeatthis]

Hello New Family,

Dad has been taking a reg. mutli-vit, B-12 that disolves under your tounge, along with blood pressure medication and 10mg of Baclofin...

Yesterday he began 20mg of Baclofin 1 in the am and 1 in the pm..

Tonight he starts Rilutek... I have been reading and I am nervous for him to start this... Is anyone on it and if so feed back of how it is working for you would be great.. He is very slow progressing he has been the same for over 1 1/2 years.... Will this help him or is there a chance that it will make him worse?????

Then of course over the weekend or Monday at the latest he will begin Vit. C 1,000 mg

Vit. E 4oo U

Beta Caratane 25,000 u day....

Because the most knowlege is here I would like to know if anyone else is doing this, done it, stopped it and how it is going or why....

Please

Jen

[TBear]

Hi Jen:
You will liklely get a diverse response here about Rilutek (riluzol). I believe that, currently it is the only drug that is used for treating ALS. Reports are that it only prolongs (or delays) the onset of ALS symptoms for 3 months. My wife was on it for 4 years taking blood tests every 3 months for liver function. She tolerated it well and still used supplements for her treatment. That guy I told you about who was diagnosed 13 years ago with ALS has been on it for at least 10 years and has tolerated it well also.
Others here will disagree with the use of Riluzol as a treatment for a variety of valid reasons... it was a route that we preferred to follow for treatment... and I'm not sorry that we did.

Good luck!

CHeers

T.

[Granny]

Hi Jill,
Welcome to the family, and that is exactly what it feels like to me. This place is very welcoming and has so many people that understand what we are going through.
I have bulbar type ALS, so a bit different than your father. But, I will tell you what I do. I started having symptoms in Fall of '03, was dx in April of '04. Since that time I have been taking the same amounts of Vit E, Beta Carotene and Vit C as you mentioned. I also take Rilutek and have no side effects. I do have a liver check regularly. I also take Minocycline, which is a drug for acne, but is sometimes used for ALS. There will be a lot of differing opinions about these drugs, but I chose to do what my ALS doctor recommended. I also take Creatine everyday.
My large muscles are just fine, I can walk miles, do my own housework, etc, but my speech is about gone and I have trouble eating. I do some tube feeding and some by mouth. I found it hard to sort out what I should do, and the more you read and research, sometimes it becomes more difficult. It takes time to get used to this diagnosis and sort out what is best for you. You will find info and help here from many helpful people.

[wewillbeatthis]

Granny & Tbear,

Thank you so much for your response. I have heard that this medication is good I just wanted to make sure that there was no way that these medications and or vitamins were going to make him worse in any way.... Now that I know that this is not the case he is going to start all of this within the next couple of days.....

I find this interesting though. The people that I have spoken with have indicated that they are on this medication and or vitmains and they have not progrossed or have but very slight over a few year time frame... I would think that this means that the vitamins and or medication is working better then we think?

Is there a difference in Limb onset and Bulbar onset of the state of progression?

Jen

[dana]

Jen,
I think everyone's progression is different, regardless of limb or bulbar onset. My dad was told he had "early signs of ALS" in March 05. His symptoms have always been his speech. The speech problem began in June 04 and progressively got worse. He can still talk, but just a couple of words at a time, and the words come out slowly. He has choked a couple of times too. Other than that, he is doing well. Physically, I think he is completely normal. He had talked about his hands feeling "crampy," but that sensation is gone since he has started taking antibiotics for Lymes disease. I just continue to pray that his progression will be very slow, and even stop where it's at. It sucks not being able to hear my dad talk normal, but I am so thankful that he is independant still.
Dana

[wewillbeatthis]

Dana,

It seems from your posts that they are thinking that your dad has lymes not necessarly ALS?

When does he go back to find out what is really going on?

I am sure it is hard not to be able to hear your dad speak the way he once did. I wish that they could find a cure for this. Or at least some sort of medication that could stop it in it's tracks.... In time they will and I do believe it will be in our Dad's life time they are getting closer and closer.

Keep the faith and the prayers going I always have our dad's in my prayers.

[dana]

My dad was told he had "early symptoms of ALS" from the Mayo Clinic in AZ. I found this forum and started doing a lot of reading. There were a few people here who talked about Lymes disease, and how they had been told they had ALS and then found out they had Lymes. I figured it wouldn't hurt to have my dad tested. So, we had his blood tested for Lymes (at a clinic that specializes in infectiouse diseases), and it was positive. He had been tested before from his regular doctor, but it was negative. After getting the positive reading, we went to a doctor that treats Lymes out of Colorado. This doctor thinks that my dad definitely has Lymes disease, but he has not ruled out ALS either. In fact, next month my dad will go back to this doctor for the Lymes treatments, and he will also see a specialist for the ALS while he is there. I have read that some people think ALS is the end stage of Lymes disease. Who really knows... My parents have been doing a lot of traveling throughout this whole process. We are from Oregon, so the trasportation expense has been a pain. But, it is worth it if it will help my dad to get better. I pray every night for a cure and/or treatments that will make my dad better. I pray that God will heal him. I am sure many of us have the same prayers.
Dana

[Al]

Hi Jen. As TBear said you will get differing opinions about drugs and whether it is safe or not to take them. Most of the people here take the drugs that are offered by the doctors. A lot of us have done some sort of research before making the decision on which treatment option to follow. Most doctors aren't complete idiots as some would have you believe. It is our choice to take them and most of us are doing quite fine or as fine as you can be with the disease. I don't believe living in a bubble drinking only carrot juice and drinking super purified boiled distilled water is the answer either. Read as much as you can on this forum and others as well as the clinical research sites and make your decisions with an informed mind.
As to your earlier question about rates of progression with sporadic and bulbar onset, usually but not always bulbar will progress faster. But as I said read the background info on this site. The Manual for Living with ALS is quite informative. Good luck.

[wewillbeatthis]

Thanks Al,

I thank you for your response. I realize that I am going to get responses that are against medication. I appreciate them and take from them what I wish....

Al when were you diag. with ALS? What are your symptons?

Also do you currentley take any medications?

Jen

[Al]

I was diagnosed in Oct of 03. I had noticed fasciculations in my right leg and general weakness since Dec. the year before. As well as my heart drugs I take Rilutek, Amytriptyline, Quinine and Vitamin C,E and CoQ10 and Creatin. I am on Bipap while sleeping ,still have good mobility. Can get up and down stairs and still drive. My hands are showing quite a lot of deterioration. I can't do buttons or zippers. Dropping coins and pills on the floor is a special treat as well. Although my niece showed me a trick the other day. If you drop something take a bottle cap and hold it down on the floor and flip whatever you dropped and it flips into the cap making it more managable. Take care. Al.

[me]

Al - that's a great idea about the bottle caps. How are your kids doing? (and grandkids)!!!! -me-

[wewillbeatthis]

Al,

I agree what a great trick....

Can you please explain something to me... Dad's really only problem is his walk.... I am confused on if it is his feet or his legs. The doctors say that he is having the nerve death in his legs according to the Spinal Tap and the EMG however, If this was the case would he still have the strength that he does and continue to build the strength? I believe it is his ankles and feet that have the issue?

From the sound of things you are doing well and you sound like a wonderful man... I can't tell you how happy I am that I found this board cause it has saved me....

Also how do you know when you need a BIP?

Jen

[Al]

Hi Jen and Melissa. Kids are great and the baby is beautiful. Good baby not much noise and she smiles every time I talk to her.
As for the Bipap, I noticed being short of breath while lying down. When on my back I couldn't seem to catch my breath. If I was on my side I could breathe OK. Eventually it got to the point that I was gasping even on my side. That's when they got me the Bipap. One interesting thing is that I had sleep apnea and had to use a dental appliance like a hockey mouth guard to keep my jaw forward to keep my airway open. When my breathing got bad I couldn't use the appliance and during one sleep study they said my apnea was gone. They thought my rapid breathing was keeping the airway open.
So I have come to the conclusion that if nothing else ALS cures sleep apnea. LOL
One of the guys in our group has the same problem with his foot and ankle. One possible cause could be foot drop. The shin muscle is deteriorating faster than the calf muscle causing the front of the foot to slap the floor . Or his foot muscles could be going bad first.
Different muscles will waste at different rates. Sorry for being long winded but hope this helps explain a few things.
AL

[wewillbeatthis]

Al,

thanks.... Sounds like this is what is going on with dad... I don't know it all just makes no sense to me.

Jen

[wewillbeatthis]

Would anyone be able to shed some light on taking Creatine for me.... I have been reading that it is something that would be good for my dad to take... I read it can't hurt and in fact it may help a great deal?

Does anyone take it and if so what kind and how much?

Also the medication that my dad is taking indicated that you should only drink purified water is this true?

I hope everyone is doing well.... I poseted on one of my other posts how things are going... Dad is doing well but I am a mess... Please read and tell me what to do to be stronger for him?

Thanks

Jen :roll:

[TBear]

Hi Jen:

Creatine is a natural substance that your body produces. The supplement has been used by body builders to increase muscle mass. There was a real push for it as a treatment for ALS in 2000. My wife was on it. Late in the year or early in 2001 there was a double blind experiment conducted to determine effectiveness and it was inconclusive. There are a lot of PALS who are using it. I think Al does.
As for getting stronger for your Dad... you'll have to give yourself some time... he was only diagnosed last week and everybody has to get used to this... on the other hand maybe you could try the creatine. It will make you strong... but I'm not sure you'll like the look!
Cheers... and find a sense of humour!

T.

[Jerry Story]

Question:
How many people here read Blaylock's book, "Excitotoxins: The Taste That Kills"?
This is a must-read book for everyone with ALS.

I don't understand the resistance against knowledge about ALS from people with ALS.

The ALS binder-book mentions the glutamate theory in passing as if to dismiss it. It contains no detailed information. Not even references. This is shockingly serious omission in the book.

Why the resistance to knowledge that would help?

I thought we are here to beat ALS. Perhaps not. Maybe I'm in a wrong discussion group.

[dana]

Jerry,
I think people ARE here to gain knowledge about ALS from people who have ALS. Why do you think Jen posted what she did? She was trying to gain knowledge about this disease that her father has. Giving her suggestions is exactly what she is looking for. (at least that is what I got out of her post)

Jen,
I totally understand how you are feeling about your dad. I know when my dad was diagnosed I felt like my world had been flipped upside down. Every time I talked to him, I would get off the phone and cry. It was hard for him to talk to us kids about it because he would get emotional too. As wierd as it sounds, it does get better. You start to focus on the things that are going good, and when a set back occurs, you somehow find strength to get through it. All you can do is be a supportive daughter. Try to treat him like you did before you found out about this. He is still the same person he was last week, but now he has a name for the illness he has. I try to make my dad laugh, and encourage him to do the things he likes. (he enjoys golfing, horse races, playing with his grandkids) He golfs a couple of times a week, he's going to a race track at the end of this month, and he sees his grandkids a few times a week too. I talk to him about things that are going on in my life, just like I have always done. I encourage my parents to do things together while they still can. I visit my parents all the time. These are some of the things that I do to help me cope. I think that it helps my dad cope too. Just hang in there and give this some time as TBear said. I know that this is hard to accept. Hang in there.
Dana

[Al]

Hi Jen. TBear is right I do use Creatine Monohydrate. I take one with no artificial flavours or colouring. No preservatives. No corn, wheat or soy. No dairy and yeast free. I take 5g or a heaping teaspoon full every day mixed in juice. It looks and tastes like Cuba beach sand but it isn't too bad. Don't know if it helps or not but so far it hasn't killed me. Another guy in our support group has been taking it but he uses the flavoured kind and takes it with water. He hasn't complained of any ill effects either. I buy it at GNC a health food store here in Ont.

And no Jerry I haven't personally read Blaylock's book or the other one touted as a be all cure all here.

Two reasons: First it is hard to turn the pages and my hands cramp up when I try to hold a book.

Second: I'm too busy enjoying life to spend hours reading unproven theories and what not by someone who wrote a book to make fast cash.

[Granny]

Hi Jen,
I take Creatine, the same kind as Al in the same amount. I take it mixed with yogart. I have no way of knowing if it is helping or not, but my doc agreed that it would be a good thing to try. Jen, hang in there, things will get a little easier. It takes time to absorb the reality of this disease, but it does get easier as time goes by. You learn to do what you can and to live one day at a time, and, for me, to have faith in God.

Al, thank you for your posts. You are able to say in a few words exactly the right things! You, Carol and a few others keep this forum going and I appreciate that!

[me]

Jerry - I wouldn't say people don't want to be educated here. Some of those writing here have been on this road awhile either as a PAL or CAL and have "been there, done that". There is a lot of wisdom here and many are trying to help the "newbies" not have to reinvent the wheel!

[wewillbeatthis]

Thank you all so much for your feed back.... Dad's doctor is on vacation and I don't want him to start something before running it by him.... I am however going to talk to him about it upon his return.

I do believe that things will get better it is just the not knowing that hurts. Dad is very good most of the time and then he gets into a funk cause someone will ask him what is wrong or what happenend and when he says ALS they about faint.... They bascially don't know what to say and really without realizing it thik of him gone.... This is not fair he could live for many years people have been known to live for 20 years with this. It could be even years before it begins to affect anything else.... I mean is he or we as a family wrong for believing this. I have faith and believe that it is important to pray GOD for a cure for all of you, to pray that some how this whole disease will stop in my dad and all of you.... You know my mom actually told me a year ago when dad was not doing well and having falls that I should not necessarly pray that it is MS or PLS cause a bad case of PLS or MS can hurt him more or faster then a mild case of ALS... I never forget that.... I thank GOD for the good days and pray that there are many years of them.I also want to thank everyone that has responded to those that bascially dismiss my questions and actually insult me... I have learned that this world is full of all types of people and everyone is intitled to there opinion, I just wish that everyone else would learn to adapt to that theory :roll: You know my fiancee told me last night that these boards are great but to remember that there are prob. alot more people out there that have this ALS and are living long and doing well the reason we don't know about them is because they chose not to write cause they are doing well. I never thought of it this way but to be honest it gave me even more hope that there really is different versions of this disease. :wink:

[Mike27]

Hi Jen,

First on Creatine, I was advised by my neuro to take it as Al laid out. Where people (bodybuilders etc) run into trouble is they double, triple or even quadruple the recommended intake!
It is in no way, wrong to think that your dad will survive this longer than 10, 20 or 30 years! Stephen Hawking has had it for over 35 years! Why so long? I’m convinced that it is because he put the disease on the back burner and brought his life to the front. His science, lecturing, wife and children are his focus, not some…life obstacle! I’m a great believer in the mind-body connection. But that’s another thread…

Jerry…oh Jerry…
You’ve given your information and we thank you! Now could you stop with the paranoid, obsessive drivel?

He shoots…
Maybe I'm in a wrong discussion group.
He scoooorrrres!! :D

[wewillbeatthis]

Thanks Mike...... As you can tell I have days when I am glued to this board for support cause I can't beilve this is happening.... other days I am doing well and able to get work done and do my day to day stuff... Dad well he is just not even thinking about it so he says but then when someone says something boy does he hit hard on the depression....

Mike forgive me if you told me this before I actually started a book so I remember all of this and don't have to ask again and again...

What is your life with ALS been like? When were you dig. how do you feel? What medication????

Jen

[Granny]

Re Mike's post:
Well said,
And hopefully, it was the last game of the season.....

Jen,
I think the attitude you have about your father's ALS is wonderful. We do not know the outcome for any of us. I have learned to live one day at a time, give lots of hugs, see and do what I can while I still can. There is nothing wrong with hope, it keeps us going, and who knows when a cure or help is just around the corner. Our faith will make us strong, keep praying for us!

Leah

[Mike27]

Jen

I'll post that info on the "who we are" thread.
See ya there!

Cheers

[Al]

Hey Mike I like your new Avatar. Is that Moses or you ?

[Mike27]

Thanks!
I got it from a Viking site, It's Odin, the chief of the Gods.
I thought it looked pretty good, either watching the sun set on a day well spent or watching the sun rise on new opportunity!

Or, just a guy standing there with a fishing rod...

Cheers Al!

[geogood]

I have had ALS since 1991 and do not take any drugs of any kind other than quinine sulphate for leg, foot and hand cramps. These cramps usually result from cold weather or too much typing on the computer and it is nearly impossible to avoid both of these!! Some people swear by Rilutek, on the other hand never being on it I kind of shy away from it. I am always afraid that something "out of the ordinary" for me might just trigger the disease. I eat only things from the grocery store as I have all my life, I get my annual flu shot and try to avoid colds. This seems to work well for me, I agree with Al even if we do have ALS we cannot or will not live in a bubble.

Geo.

[Mike27]

Hi Geo,
Whatever you're doing it seems to be working well!
I know what you mean about the cold, I always cramp up in the cold! Up to my jaw, that's fun!

I take the flu vaccine as well, I also take the pneumonia vaccine. It's good for 5 years (I believe) but I think it's important.

I was offered Rilutek, but like you, I don't want to mess up whatever I'm doing.

Cheers!

[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.