The Medicatio and Vitamins Begin Today Please Advise

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wewillbeatthis

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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

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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

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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 diagnosed 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

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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

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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

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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

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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

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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

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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

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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

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

wewillbeatthis

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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

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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

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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

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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:
 
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