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Peaceofmind

New member
Joined
Sep 27, 2014
Messages
2
Reason
Learn about ALS
Diagnosis
09/2014
Country
US
State
Idaho
City
Boise
Hi one and all I was just diagnosed with ALS 3 weeks ago. It was a crazy shock to be told that. I first noticed symptoms back in December, I couldn't quit get my fork of food to my mouth. Had no insurance so I went to a clinic and had to get referrals from them to see specialists. First they thought I had lung cancer so they sent me to have a ct scan of my lungs, then after a month they had me go get a MRI of my brain then on to a pulmonary specialist, finally to a neurologist a month and a half ago. They did the official test 3 weeks ago where they shock and put needles in my muscles to listen for activity. So far the most extreme thing is my left hand and arm, my throats been slightly effected, my legs the last week have been getting spaghetti like if you know what I mean. My brother has me taking shark oil, vitamin c, extra virgin coconut oil,colloidal silver, flax oil mixed with cottage cheese, he's also got this muscle shocking device coming soon, going to an actupunturist Tuesday and a holistic dentist seduled for the very near future. The only thing I've noticed so far is my voice kinda clears up off and on. Maybe it's nothing, it might just be part of the ALS doing a back and forth :-/ anyways to all of you out there, I'm sorry we're all going through this. I'm glad I found this site on my phone. I'm not very computer savy, so I hope if someone reads this and responds. I can figure out how to retrieve? My names Bill and if there's anyone else trying something funky and you think it's giving you some benefit please pass it on!? Bye for now all
 
Wish I could encourage you, Bill. So far, there's no escape, only delay. In the Can't Hurt category, you should be taking Riluzole. Beware the holistic dentist if he wants to remove your fillings. Our late holistic minister with ALS went to Colo. to have her fillings removed, at high cost. It didn't help, and neither did the Asian guru who walked on her back. Cocoanut oil came recommended by a physician at VA.

I rub Hemp Lotion on the back of my neck a few times a day. It calms the jitters and keeps the neck cramps away.

GB
 
Good morning Bill. Sorry to be welcoming you to our elite group. I would look for some posts from Max. He has put up his vitamin and medication regimen several times. Als is a varied disease. It affects everyone so differently. Read the forum pages....even those you think dont apply to you. You will learn alot about the disease. Ask all the questions you want. There is no stupid question and there is a lot of knowledge here. The stickies at the top of a forum section are particularly helpful.
 
My dr's told me the same that Max did. we all hope for things and there ant nothing wrong with that. I got hurt two diff times on the job. they told me i will never walk again. both times. well i showed them wrong. don't know how long im going to be able to do that now because of this dame disease. always keep up hope and keep going Don't give up there is always a light at the end the tunnel.
 
Search for things that stimulate your mind...for me it is TV and reading, and I cherish the visits from my grand daughters. I can still ride my trike, although I see that ending because my balance has gotten so bad that it is challenging to mount it. I dread the thought of not being able to get on it.
I would suggest that you stick with traditional remedies to deal with this disease. Try not to waste your time on the witch doctors. I think acupuncture is purely psychological, have tried it various times in my life. If you buy into it then maybe it can help, but I say put your money toward proven treatments.
BOTTOM LINE......DO NOT GIVE UP! The Grimm Reaper takes you in bits and pieces, learn to fight him.
 
Bill, it looks like you're spending money on quacks. Please use real doctors. This is a real disease. You don't want those "alternate medicine" people to screw yo up and take your money.

Especially the muscle shocking device. What an idiot.
 
Welcome, Bill! I agree with BIGMARK. Focus on enjoying what you can do and fight to keep your mind busy and in a "good" place.
 
Hi Bill
Sorry to have you join us but welcome.
It is understandable that you want to pursue alternative therapies but please be careful. The muscle shocking device does not sound like it would be helpful and possibly harmful. Overstressing the dying muscles will make the disease move faster. I have heard of people have their fillings removed but none ever reported benefit that I know of.
I echo the recommendation to try riluzole. The 2-3 month life extension often quoted is really extension by 10 percent. If you get on it early some neuros think the benefit is greater.
Research supplements thoroughly.
I personally take
Vitamin e
Vitamin d
Turmeric
Resveratrol
L serine
Acetyl l carnitine
Glutathione
Zinc ( the last is based on blood tests and monitored by my neuro,who either suggested or approved everything I take)
It is my opinion that the riluzole helps me the most
 
Welcome to the elite club Bill, I do wish you hadn't had to join us though.

I agree be careful of any expensive alternative therapies that sound a bit 'way out', they could be rip offs. However, explore by research anything that could help. Bounce ideas you find off others here, there is so much collective information.

I used homeopathy for myself and my PALS with varied results as we used it for some very different types of things.

I can guarantee however that there are a few important things you can keep in mind:

1. DO NOT FALL - this will speed your progression as well as possibly end in serious injury
2. EAT HIGH CALORIES - it has been shown in many studies that PALS who lose weight progress faster, and that PALS have very high energy needs.
3. CONSERVE ENERGY - doing too much will also speed up progression
4. AVOID PEOPLE WITH COLDS/FLU - these can be deadly when breathing is affected
 
I think it's awesome your brother is helping you out on your research! I myself am frustrated with the drs not giving us hope! Truth is the FDA will never approve a treatment that is natural. The pharmaceutical companies can't profit from natural! I also believe they would discredit any natural cure. I'm sure that they will eventually make stem cell treatments available, hopefully in our lifetime! I myself plan do try to detox my body ones I'm done overindulging fast food and other junk! I plan to keep a log once I start. Who knows what great information we can share with the internet available to us to reach others trying new things! I have read others that have tried the muscle stimulation, the problem with that is are muscles aren't the problem, out brain communicating to them is the problem. I already have my medical marijuana card. I use the edibles, I have yet to try the oil. It has helped with my cramps as well as eliminating the saliva problem in my throat. I also use coconut oil as well. I'm just beginning my journey through this as well! So, I hope you keep your spirits up, and hope alive! After all, nothing is impossible! At one point people thought we could never hold a little device in our hand to see the world through it and here I am holding it now! Good luck! Keep posting!
 
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1. DO NOT FALL - this will speed your progression as well as possibly end in serious injury
2. EAT HIGH CALORIES - it has been shown in many studies that PALS who lose weight progress faster, and that PALS have very high energy needs.
3. CONSERVE ENERGY - doing too much will also speed up progression
4. AVOID PEOPLE WITH COLDS/FLU - these can be deadly when breathing is affected

Ditto that!
 
Stopokahontas , please check with the doctor before you do detox. Sounds like you are concerned over eating "junk food", high calorie. Obviously you need good nutrition, but you have been given a free pass to eat high calorie food that you might have avoided in your " other" life. You can indulge in ice cream, butter, etc. knowing it will help you maintain your weight and that this disease needs that type of thing. If you haven't already seen the dietician at the ALS clinic, please do. Good luck.
 
Listen to these people, they know what they are doing. Riluzole is a good idea

Janie
 
Welcome to the site. Unfortunately there is no real treatment for this disease-it is always fatal.
Riluzole may help some people live longer and Nuedexta seems to help many people with swallowing and emotional lability issues which can improve quality of life.
My neuro was pretty blunt with me-he said trying most supplements probably wont hurt, but it will not stop the disease either.
Anything you get for muscles will be useless-the nerves to your muscles are dying so stimulating the muscles is a waste of time and money.
Stopokahontas I dont think its a matter of hiding a treatment-there just isnt one yet. My neuro at the ALS clinic thinks its probably about 10 years out-too late for those of us who have it now.
 
Thanks for all your responses, one of you said to conserve my energy. I've never been one to just lay around. I have 2 great dogs that truly need there back mountain hikes, there like my kids, if I don't get them out every day for about a 2 mile walk my youngest dog stares at me with his sad puppy dogs eyes, sighs and wines, besides it give me a good feeling of accomplishment, so I sure hope your wrong, even my neurologist said to exercise to keep my heart strong, anyways dear people I really do appreciate all of your insite. Another little tidbit; I've also been mixing equal parts of organic cottage cheese and flax oil, my brother pulled something off the internet saying that taking those 2 things help clear up the abnormal amount of glucose in the brain of ALS people. I don't know if it's going to do ditaly squat but to me it's worth a try. Going to end here. God bless all of you :) bye for now
 
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