[Karl]

Hi Lisa,

I’ve had symptoms for about 8 months.  Lots of fasciculations, muscle cramps and spasms, some spasticity, muscle weakness in my feet and legs, lots of fatigue of the legs, loss of function in both my toes and feet.  A few months ago my pinky finger on the right hand started twitching and locking up.  I really started to get concerned then as I work on a computer and loss of function in my right hand could really hurt my ability to provide for my family.  I was also tripping and falling lots whenever on uneven ground.  My neurologist did an EMG and then I had an MRI on my lower back (l4&l5 vertebrae) but he would not diagnose me.  He told me to live life and enjoy it and come back 4 months later for more testing.  Waiting is difficult for me (and probably everyone).

I have been waiting and researching for the past 2 and a half months.  I do not have the babinski sign (at least not yet).  My understanding is that ALS involves both upper and lower motor neuron disease.  The babinski sign will reveal if you have upper motor neuron disease.  Have you checked into that?

During my waiting and researching I read several clinical studies that suggest that ALL pALS test high for mercury and aluminum.  If you research the symptoms of mercury poisoning you will see that they are very similar to ALS.  For me, I have no reason to think that I would have mercury poisoning (no career or anything associated).  I went to a Naturopath and he tested me and indicated that I have high levels of mercury and aluminum that are causing issues in my body.  That does not actually mean that I have high levels of mercury but that I have high sensitivity to mercury and aluminum and/or I get issues with where my body is storing the mercury (supposedly even a couple mercury molecules near a neuron will kill it).  Have you looked into this?  The problem is that mercury is stored in tissues and blood tests for mercury won’t show anything unless you force it out of the tissues.  My neuro just asked a few questions about this but did not test me.

My naturopath said that he needed to support my liver for about 6 months before it would be ready to detox the mercury from my system.  He put me on a strict diet (no wheat, corn, potatoes, tomatoes, peppers, sugars (except stevia), chicken, alcohol, soda pop, MSG, dairy, seafood, chocolate, peanuts…you ever tried sheep cheese?) that I have adhered to for months.  After a month of the diet my muscle spasms almost disappeared.  The fasciculations are there still but are mostly very mild.  The spasticity is definitely gone.  So maybe an extreme diet might work for you??  Have you looked into this at all?  Definitely avoid any neuro-toxins like MSG (in a lot of packaged foods).  You could start seeking out an experienced dietician or naturopath that could help with this.  3 months ago I would never have advocated for this just because I didn’t want to pay for it myself ($800 in supplements $300 for 2 appointments).  My results have changed my mind as life is more comfortable which makes it worth it.  My naturopath indicated that a healthy fully functioning liver could make all the difference even before detoxing the mercury.  I believe that is why I have improved with supplements and diet alone (I still have loss of function and lots of fatigue but all other symptoms are better).

My naturopath suggested that when my liver healed, it would be able to detox the mercury slowly on its own.  He also said likely in March we would start a mercury detox program (really hoping that that will bring back my function in toes and feet).

For now, I am waiting for my next EMG with my neurologist in January and then later that month another appointment with my naturopath who will again test my liver and levels of mercury.

Not really sure if any of that helps.

Karl