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john0812

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Hi there everyone!

I am pre-diagnosis. I am Male, 51, and after procrastinating for perhaps a year (maybe more?) finally went to my doctor in early Feb 06 with fascic. in thumbs, some fingers, among other places. First Neuro visit led to 2nd at an ALS clinic. I've been in fear city ever since. It monopolizes my life - even though the neuro at the clinic said that people who come in with fascic. don't usually end up with als. She saw no evidence of 'denervation' at that time (mid April). Since then the fascic have increased in # of areas and generally decreased in intensity (I think because the muscles are weakening). I have less strength left in my thumbs than in April - at least I think so. Everything still moves fairly well. One thing that concerns me is a weird feeling in my throat - sometimes it seems like when I swallow it kind of does something in between a squeak and a gurgle, deep down in my throat. Also, I did for a day or so experience a very low vocal energy situation. Thinking back, I have probably for over a year lost my voice if I have had to speak loudly (due to background noise) for extened periods (say at a party or something).

So .... back in April I was seeing a naturopath for back problems that result in numbness in my feet - especially my left foot, also thigh. I was getting prolotherapy injections in several areas - gvenerally it did nothing for me although my back does seem more solid - but the foot numbness is actually worse.

Anyways I soon returned to another naturopath that I had seen before ((1989) as I trust him. He put me on a supplement program, then added yeast killer, then finally mercury chelation. I would like to point out that he is ultra conservative. I can eat pretty much anything that I want (and do). The yeast killer is conservative, also the DMSA (100 mg with Cilantro tincture every 3rd day).

I decided to stop drinking and did that around 3 months ago (thinking that if I was going to fight whatever it was - I was going to give my body all that I could). I also do not eat sugar, drink pop, or coffee (green tea once or twice a day).

My naturopath said that I did not need to get my amalgams out, saying that the DMSA program would pull out the mercury faster than It was going in.

I felt that my symptoms were getting worse about 1 1/2 months ago, and decided then to get the amalgams out via a holistic dentist (and a single root canal for good measure).

It's been just over two 2 weeks since the last of the amalgams was removed.

I think my symptoms are still progressing but I am not sure. I have (last weekend) read "Eric is Winning" and I've also read a lot regarding his web site and products, etc.

My questions are:

a) I am eating pretty well normally but continue to lose weight. I weighed myself in the morning at 143 lbs (I am almost 6') - I probably weighed just over 162 lbs 3 months ago. Granteed a lot of what I've lost was in a small beer gut, butt butter, etc. but that came off within the 1st month or so. Is there any other reason that I would lose weight (if I do have als)?

b) I have continually been aware of the degradation in my hands, arms, etc. Is this normally the case?

c) I seem to be having headaches in the back of the head - is this something that others have experienced?

Thank you in advance for any responses at all - even if it's 'come back when you've been diagnosed'

PS - I couldn't figure out how to post a new message in the general forum - that's why I started this new thread .....
 

Al

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Hi John Welcome to the forum. Sorry for the reasons you are here but glad you found us.
Question A. Muscle weighs more than fat so if you are losing some it will show in weight more than in inches. B. Sometimes you can see the degradation but then it will plateau for a while. We all hope for long plateaus. Some peoples upper limbs go first (mine) before lower. C Headaches at the back of the head can be from muscles weakening and working harder to hold the head up or just plain stress headaches. Relaxation therapies might help with that. No problem with the new thread. There are some instructions for posting in the new members area. Take a look when you get a minute. AL.
 

john0812

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Thanks Al!

Thank you.

Is exercise a good idea? - must admit I haven't done much lately. Still working, self employed, very busy, at times very stressful - I've often thought this job might kill me.

How do you show city/province/country in profile?

I'm smiling cause it's the weekend !
 

Al

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Exercise is good but not to the point of exhaustion or if you feel a muscle pulling or pain stop doing that. Don't forget that if you damage a muscle it will not repair itself.
Click on user CP at top left of page to get edit profile section. Make changes or add on and save changes and we'll know a bit about you. AL.
 
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john0812

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exercise continued

Thanks Al,

So will any muscle tissue develop? I had a frozen shoulder about a year ago and started seeing a physio for that, and it is now pretty much resolved. After that I saw her for neck (since related to shoulder), then arms (the neuro at the ALS clinic said I might just have tendonitis in my arms), then I had some pain in my left knee that I saw her for and she gave me some exercises for that and later said that the muscles had gotten stronger. I know the neck exercises also helped me, that was around the beginning of the year.

?

The other day I decided to see how many squeezes I could do with one of those hand exercisers. My right hand seemed a little numb after that, a bit stiffer.
 

TRACY22

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john?

I may not be following you. Does your neurologist say u have ALS? and it seems u are being treated/diagnosed by a naturalpath? no sarcasim intended
 

john0812

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Tracy

I have not been diagnosed (3rd EMG in 2 months) . I do have escalating symptoms, IE fasciculations, some throat issues but no choking as yet, muscle weakness particularly in thumbs, wasting.

When I 1st went to my naturopath, he said that it can usually be cured, if caught early enough - and that may be to my detriment - I think the symptoms started 1.5 - 2 years ago (I just didn't do anything about them).

I have been a fairly negative person all my life - it's learned and not easily reprogrammed I am finding - so it is natural for me to believe I will die with ALS. I also have felt like a victim all my life (although you'd probably never know that - I just started admitting that to myself lately) - and what a perfect disease for a victim!

I see a pyschiatirst weekly for depression (for about a year now) and I belong to a group for codependency - due to a child with alcohol/drug dependency issues.

You wouldn't be the first to suggest (if I read your post correctly) that I am getting a bit ahead of myself.

My biggest concern right now is that I appear to be losing weight (approx. 20 lbs in 3 months - I am 6' and now 143 lbs) and therefore I was wondering if 'any' muscle groups in a pals will improve with exercise or is it just worth doing it for other reasons?

By the way, I 'do' believe that Eric Edney has a point and that environmental toxins, and quite probably mercury in the body has a lot to do with als (and other neuro disorders) but I have my doubts whether eliminating the mercury will fix the problem IE too little, too late.
 

john0812

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Did I mention that I can type faster than I think!

Before anyone begins to get upset, please understand the victim comments are all about me, nobody else ....
 

Al

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Not a problem I'd say John. This is a pretty hard thing to deal with and some deal better than others. You'll get better at it. Most of us do. About the only thing I agree with Edney is the part about environmental toxins but blaming one is silly. 30,000 Americans on any given day couldn't all have been exposed to mercury. Other toxins I am sure of and as you say selling you a plan to rid mercury and other metals from your body has proven as you say too little too late. It may have worked for some but I doubt it. They were probably doing something else at the same time and it helped. Just my opinion, I could be wrong. AL.
 

TRACY22

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ok?

"When I 1st went to my naturopath, he said that it can usually be cured, if caught early enough">>>>>>>>>>Ihope this person was not talking about ALS. If so,run.

And back to your origial statements on weight loss. Many here, without prior confirmation,knew something was wrong with our bodies. We went on strict healthy eating plans and some light exersize.

I lost 15lbs in 1 month from 155-140. AFTER my diagnose i found weight is more importnt and dropped the brown rice and fish for omletts,steaks,salads an ice cream. Gained 10lbs.

being a negative person do you go to church?


OK""""""AFTER 10pm ambien is working just fne

thanks john for being open
 

john0812

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grateful

Thank you Al and Tracy for your responses. I am grateful for them.

My Naturopath made no claim that he could cure me.

** links removed**

Part of the problem I suppose is that I have tried a whole bunch of things instead of one at a time. Anyways, I will continue the chelation therapy and support supplements as they remain a slim hope for me and the cost is fairly negligible. Visits to my naturopath are $40 and have been far more productive than the last one I saw at $80.

I would like to point out that I don't eat anything in particular, IE I consume a broad range of foods. The only things I don't eat are anything with sugar, pop, alcohol, etc.

Finally got around to hanging a gate yesterday on a fence I started on last fall in the back yard. Man is my left shoulder sore today and left forearm is sore despite wearing braces on both arms. It's funny, they don't look that bad but man are they weak!

Anyways, I'm off to the PNE today so everyone enjoy the day as much as possible!

Thanks again and bye for now ....
 
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