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ALS Community

This patient support community is for discussions relating to Amyotrophic Lateral Sclerosis (ALS).
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als

by klag, Sep 23, 2007 04:40PM
dear dr. i know this is a information site. i have posted before. my left side is atrophing. i have been twitching for 24 months with muscle and fat loss. i have lost 60lbs in this time. had 6 emg/ncv with no dirty emgs other than fasiculations. my joints hurt. my gp wanted the neuro to do a tinselon test as he feels it would draw out the twitching by flooding the muscle membrane. this was done to him for cfs to show the muscle fatiguing. they wont do it. i have also on off double vision and perminent double vision in lower gaze they cant explain. i am also now getting shooting nerve pain in my teeth all the time. my reflexes are 3+ legs and 2+ arms. no planter response to down going. no hoffmans sign. and last checked no jaw jerk. it is massive confusion. i can produce pytosis by blinking my eyes for 1 min. i have had neg thyriod, celiacs blood test, low ck values, normal adolase, normal blood and urine. it was sugested hasomitos with normal tsh might cause this. antibodies neg for hasimitos. mg blood tests normal. no one will persue emg with jitter to see if mg is part of problem. me and gp dont know what else to do. any advise please. its like all fat is disappearing from left side.
Member Comments (3)

by aldermen, Jan 18, 2008 10:15PM
To: klag
klag,
I'm not a doctor, but have you considered the possibility of mercury poisoning?
I attended a talk by John Moore last evening regarding mercury detoxification and he mentioned ALS specifically as a condition he believes is linked to Hg poisoning. I was researching this topic for my some of my own health concerns and my search linked me to your question here. Some of the symptoms you describe above match those of mercurial poisoning. Since the doctors you are working with don't have all the answers, what would it hurt to look into it?  He gave us his number in Renton, Washington USA so I'll share it with you, 253.226.4464. Who knows, maybe it will be helpful to someone. Hope you find the help you are looking for. Keep the faith.

by aldermen, Jan 18, 2008 10:31PM
To: klag
Correction to the telephone number on my last post: 425.226.4464 not 253 (area code)

by chochmeh, Jan 19, 2008 03:31PM
To: klag
i agree, check for heavy metals and lyme...did they do a spinal tap???MRI's??? other things can cause twitching...good(no great) sign is six clean emgs...over a period of time...that would rule out ALS for sure...did the atrophy show up on NVC/EMG?  not all atrophy is ALS!!! self defined atrophy doesn't cut it...have you fallen unexpectedly...kinda like your legs weren't there??? this is another sign of ALS...i am not a doctor but ALS is pretty blatant on EMG...i wish i could have had a clean one...the weight loss could be due to other things...
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