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CaptainPlanet

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Hey guys, been running from the dreaded ALS for a while now. It seems like it is inevitable at this point.

Presented with eye fatigue, breathing difficulty, and weakness in one of each limb. Twitches started in legs at the same time I noticed the llimb weakness.

Not much long later, I had emotional difficulties (was crying/laughing way too 'hard')

I was observed at memorial hospital and was immediately refered to a neuro after several blood panels.

Neuro just completed my EMG and was shocked. He my arm and leg were pretty bad but my lumbar made the machine go haywire. He suggested bulbar onset ALS, and is referring me to USC. I was also slurring my speech considerably by the EMG and the Dr kinda knew.

I've already spent my time crying and being afraid of the disease but have since found peace with it.

I spent years of my adult life sourrounded by various electronics, computers, and sound equipment. Not to mention wireless,bluetooth, and fios coax.


In addition to that, i lived in a house with black mold from a broken seweg pipe that leaked under my room. I read somehwere that high mold exposure and electromagnetic fields are suspected to have a connection with ALS.

So basically, in my mind, I gave it to myself by living in mold and electricity for years. That's the only thing I can think off that could have caused it in me being so young (26)

Any thoughts?
 

CaptainPlanet

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I also wanted to mention, I had already had a spinal CT that came back normal (anatomical alignment). The Hyperflexia along with bad EMG is why my Neuro is sending me to USC with suspected ALS. I'm staying out of the "Newly Diagnosed" section until I hear from the horses mouth. But I know that this is ALS.
 

Atsugi

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Sorry to hear it.
Wishing for you some other, non-fatal disease, preferably a curable one.
 

Gembead

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Hi CP,
Sorry you have received such bad news, wish there was some nice words of comfort I could offer you. Sending you a big hug.
Love Gem
 

patrick123

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I'm so sorry you have to be here. I hope it is something else but if ALS is confirmed. Remember there is life after ALS. don't live Outside of the disease be proactive ask questions seek information. And remember we are here.
Patrick
 

CaptainPlanet

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What do you think caused ALS in you?

Hey everyone, I saw a similiar thread asking pals this same question on neurotalk and would like to open a discussion here.

Here's mine:

I lived for years in a room full of electricity, in between my bed and the wall was the fios signal station; that along with countless gadgets including recording equipment, computers, modems, routers, wireless devices, printer, CAT5 cables, game consoles, and patch cables.

I rarely turned anything off due to lazyness.

Also, we found black mold underneath my room after a sewage leak that took over a year to find the source of.

In fact, before I had ALS symptoms, I went through a variety of odd neurological happenings in my body while in this room.

I would get mood swings, panic attacks, and my eyes would sometimes dart back and forth on their own and make me dizzy. At no time did any of these things concern me in fact, I thought my problems were mental and found a psychiatrist.

When I learned that high black mold exposure causes everything from panic disorder to bipolar disorder and it's cousin cynoabacteria has been linked to ALS and other neurological diseases; this made my heart drop when my DR told me he couldn't take ALS off the table and sent me to USC.

I dunno, my gut tells me that's what did it. Living in a petri dish surrounded by Electromagnetic fields for years makes sense to me.
 

Atsugi

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Re: What do you think caused ALS in you?

My wife was a military doctor during the Gulf War.
Saddam Hussein didn't use chemical weapons, but you can bet your a** that we transported stockpiles of the stuff all around the world.
Veterans of the Gulf War get ALS at double the rate of civilians. So that could be a factor.
 

MaxEidswick

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Re: What do you think caused ALS in you?

>Veterans ... get ALS at double the rate of civilians

which the VA currently attributes to stress.
 

ECpara

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So sorry CP! Maybe just maybe they're wrong. Even so, don't beat yourself up that you "gave it" to yourself. With the exception of familial ALS, there's not one PALS with sporadic ALS that knows why they got it. It's the 64 million dollar question. The theories you've read are a few in a thousand theories. God bless and good luck; keep us informed.
 

Mediasmart

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You didn't get it from mold or Bluetooth. .you just got it. Work on your future and stop second guessing your past.
 

nebrhahe53

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Re: What do you think caused ALS in you?

I attribute it to bad luck-its the only lottery I ever "won". Maybe the 21 vials of blood they took-some of which was for a DNA databank will help future sufferers.
 

davbo49

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Re: What do you think caused ALS in you?

that's about it, bad luck
 

LoveMyKids

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Re: What do you think caused ALS in you?

>Veterans ... get ALS at double the rate of civilians

which the VA currently attributes to stress.

Stress? That is interesting. I have actually not spent a lot of time searching the internet, but I had seen that veterans had a higher rate of ALS. I wondered what they attributed that to.
 

Clearwater AL

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Being that you are only 26 years old, your adult life as you refer to it, would have only had you around RF energy for 5 or 7 years. So, you can scratch electromagnetic field (RF) off the list. And... at 26 years old you will defy odds often posted by very knowledgeable members here. I'd say those astronomical odds they have posted are in you favor that you have something else besides ALS.
 

CaptainPlanet

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Hey AL thanks for saying so about the RF. I actually teared up when you mentioned the astronomical odds, but in my case the hyperflexia, paralysis in my facial muscles/slurring of speech, body-wide fasciculations, eventration of diaphragm, clinical weakness, and bad emg have sealed my fate with this disease. I also must be a fast progressor as I went from weakness,fascics to slurring of speech in 4 months.

Probably due to using cigarettes as my only form of comfort while I waited for tests.

My family has a history of neurological issues including but not limited to: Myclonic seizures, cramping syndrome, parkinsons, and others.

Perhaps my case is somehow 'familial' in that aspect.

All I know is my hope has ran out.

I mourn every day for all of you who have been touched by this monster. I love you all.
 
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