Dad Recently Diagnosed -Exploring Possible Causes-Can Anyone Relate?

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Thanks for supporting my decisions David. We're only here to help each other. AL.
 
No sugar coating

I was glad to read your post, something a lot of us would like to say but may fear the outcome. I know you have the right idea and we have chose that path as well. Cheers to you and yours. :mrgreen:
 
David & Al, I have a question for you. After lots of research I chose to have my amalgams out 6 weeks ago. My symptoms doubled in a couple of weeks and I lost half of my upper body strength in the same period. Any thoughts on this? If mercury isn't related to ALS then is this in your opinion coincidental?
Meg1, I would be interested in what you are doing/have done for treatments as you are a 7 year survivor of ALS and haven't filled out your treatments profile on PLM.
To all three of you, I haven't heard you express an opinion on the PON gene studies yet. Is the toxin connection an abberation or a clue?
Thanks, MarkNH
 
Well for one thing there are theories about trauma having something to do with ALS. To some people having a lot of dental surgery is considered trauma. Could just be coincidence or if the theory is right and you believe others that taking out fillings releases more mercury into your system than leaving them in then maybe you made a big mistake. Who really knows? You have to do what you think is right for you at the time.
I'd have to read up on the gene studies to offer an opinion but I do believe in the environmental toxin theory.
By the way may I ask where you are from? AL.
 
I am from New Hampshire. I am a PALS of over 4 years duration. I'm still driving and working full-time. I don't take prescription meds, only herbs and supplements. Here's the link to one of the gene studies:

http://www.mda.org/publications/als/als-curr.html#detox

I'd be interested to know what you think Al, because this study gets almost completely ignored on other sites. It's like noone wants to hear it for some reason.
MarkNH
 
MarkNH said:
Meg1, I would be interested in what you are doing/have done for treatments as you are a 7 year survivor of ALS and haven't filled out your treatments profile on PLM.
To all three of you, I haven't heard you express an opinion on the PON gene studies yet. Is the toxin connection an abberation or a clue?
Thanks, MarkNH

Hi Mark. Good to see you--I haven't seen you around in a while.

I haven't filled out my treatment profile because I haven't attempted any treatments. By the time I was officially diagnosed (in 2003) it was apparent that my progression was very slow. I was offered Rilutek, of course, but refused it because I was taking other drugs that taxed my liver, was concerned that there was scant long-term experience with Rilutek (and I knew I would be a long-term survivor) and because I didn't want to upset whatever was making things work so well for me. I suppose that if I had begun progressing more rapidly at any point I might have begun the Rilutek (and still could, I guess) but basically I have just kept on doing what I was already doing--eating a good, healthy diet supplemented with lots of things I like such as diet sodas and desserts, exercising regularly and taking a multivitamin, a B supplement and magnesium for leg cramps. And that's pretty much it.

As for the study you mentioned, I have read it and it sounds promising. I have long thought that even though I clearly don't have FALS there is likely some genetic component to even the sporadic disease. Other than that, the causes don't interest me a whole lot. There are plenty of diseases whose causes we know all about that we can't cure (lung cancer, liver cancer) and loads of others that are very successfully treated and/or cured without knowing the cause (childhood leukemias, several of the ALS mimics like MG and MMN). I'd much rather the researchers concentrate on cures than causes.
 
Ah, but Meg my dear! If you can find the cause, such as faulty Pon genes, then it should be a relatively simple matter to deliver a gene modifying virus to help cure it, right?
And the red flag in this study is two fold...genes and toxins. Everyone seems to be missing the point that at least in some cases toxins cause ALS. This is the first Western supported clinical, unrefutable evidence of this, and it seems rather important to me. MarkNH
 
MarkNH said:
Ah, but Meg my dear! If you can find the cause, such as faulty Pon genes, then it should be a relatively simple matter to deliver a gene modifying virus to help cure it, right?
And the red flag in this study is two fold...genes and toxins. Everyone seems to be missing the point that at least in some cases toxins cause ALS. This is the first Western supported clinical, unrefutable evidence of this, and it seems rather important to me. MarkNH

Can you name me another illness/condition for which a gene-modifying virus can be delivered in a relatively simple manner to cure it?

You know, Mark, this may be it. This may be the holy grail of a cure. But anyone who has been around the ALS community as long as I have has seen lots of promising research and drug studies that looked (to a layman's eye) pretty bulletproof. I've learned not to get my hopes up.
 
Hi Mark. I read the link you submitted and found it interesting. My neurologist has told me he is leaning towards a genetic weakness combined with toxic exposure as a cause for ALS. He is now attempting to get funding for a research study. As for the Gulf War Syndrome no one really thought that the military would admit they poisoned their own people. That is just not done by any military anywhere. Not sure if you're aware of this but this will be a Canadian study. Not that that should make a difference but similar theories coming from different countries makes me think that maybe somebody is on to something. Lets hope so. AL.
 
Al, I'd be happy to be an enrollee! Meg, I know, I know! Since about a month and a half ago most of my time is spent in a wheelchair, so I'd love to find something to at least stabilize my condition.
Mark
 
Hey Mark. You might NOT want to part of this study yet. He wants part of your brain and spinal cord tissue at autopsy. I told him he could have mine but I'm not finished with them yet. Hopefully we won't be in his study for quite a while yet. Take care. Have a good day. AL.
 
I believe that when the cause is determined it will be a combination of spinal cord injury, either sports related or an accident, and environmental contaminants. I feel that everyone should do a lot of research and determine a plan to follow, then follow it. My only suggestion to anyone is to remember that HOPE is not a plan...it is only hope. I am so glad to find so many old friends here, it is like old home week. Hugs
 
Hi susan. Welcome. Where do you know anyone from? I don't recognise your name and you didn't give any info in your profile. AL.
 
Al said:
Hi susan. Welcome. Where do you know anyone from? I don't recognise your name and you didn't give any info in your profile. AL.
I think Susan is from the presently moribund BT forum.
 
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