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skydog

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Hi guys
I posted about three weeks ago regarding my anxiety about the fasiculations occuring over all parts of my body. I saw a GP who prescribed some anxiety meds and have since had an MRI. Appt with a neuro coming soon. I am a 31 year old male.

Unfortunately the symptoms keep progressing - I've noticed atrophy in both forearms and shoulders. My hands and fingers still work reasonably well - well enough to play guitar and type on the keyboard pretty fluently. Lots of new cracking sound in my joints, as well. My neck is always tired.

I've also experienced some difficulty swallowing - tongue feels sort of thick and fat. Although (no pun attended) if I have a couple drinks, it kinds of feels looser and more relaxed. On top of that I haven't had a full night sleep in about two weeks. Getting about two or three hours at most; the rest I'm awake staring at the window. At first thought it was anxiety and now realize it's due to a lack of oxygen entering my lungs possibly from a weakend diaphragm. I always slept on my stomach - now I'm sleeping with several pillows propped behind me. I'd go get a bi-pap but my fiancee would freak.

In retrospect the symptoms started about 6 months ago with fatigue, tightness in legs and sore lower back - which I ignored as rotuine soreness from running and working - about a month ago the fasiculations arrived and my life changed as I was plunged into the world of ALS. My parents and fiancee are terrified. I think I'm past despair. Especially since I've started thinking that I accidentally and stupidly inflected this on myself with the use of a recreational drug at a party several months ago...Like I was the unwitting author of my demise not knowing enough about "ecstasy" to tie it to this disease which I wasn't thinking about a few months ago.

So, does this progression seem unusually fast? I understand each person has a different progression time. I just want to make it to June 6 (wedding date) standing on my own two feet! Or a walker if necessary....
 

freddiesnetty

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Hi,
I don't know that you can solely blame drugs on this...........My husband being a musician for 30 years plus, did also do alot of recreational drugs, cocaine to name one. He has often wondered about that....I do know that his fall from the stage, did wake this up and every time he took a fall it did speed up the progression. Freddie is not proud of his past. But guess what we all have a past, So do not beat yourself up and don't WORK yourself, get to a neuro and then go from there. And this is just an opinion, if you need a bi-pap, then get one don't worry about people freaking, This is YOUR life, not to tell you what to do but do mention maybe some anti-depressents. I know that Freddie would be a wreck without them. But don't worry too much until you get a diagnosis, your just working your self up and anxiety can lead to alot of things, I hope this helps...Hang in there and hang out here. LOTS of helpful folks here that do CARE!
Your Friend,
netty
 

Al

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We've been through this before. One night of Xtacy will not give you ALS. Try to stay calm until you see the Neuro. I don't think you'd see atrophy in this short of time.

AL.
 

BethU

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Hi, Skydog ... I'm sorry you are having these distressing symptoms. For what it's worth (I'm no doctor) it doesn't sound like ALS to me. I'm glad you have an appt with a neuro soon .... hopefully he/she can help you sort things out, and eliminate ALS from your concern.

One thing I will say, though ... you said: I've started thinking that I accidentally and stupidly inflected this on myself with the use of a recreational drug at a party several months ago...Like I was the unwitting author of my demise not knowing enough about "ecstasy" to tie it to this disease which I wasn't thinking about a few months ago.

If drug use of any kind were connected to ALS, 1) Half the population of the US would have ALS ... think about it; you are too young to remember the 60s, but trust me, if there were a connection, millions and millions of people would be very, very sick right now, and 2) people who are opposed to recreational drugs would be screaming about it on every talk radio station in the nation.

I've read about the unfortunate kids in northern California and Parkinson's, but there has never been a connection like that with ALS that I know of.

I know it's impossible to tell you not to worry, but do try to worry less. Your sleeplessness can be contrituting to the anxiety, and the anxiety can be contributing to your sleeplessness, so it could be a vicious cycle.

Hope you get your answers soon ... and do stop blaming yourself for any kind of drug foolishness. Motor neuron diseases are not a punishment for having been young and dumb!

BethU
 

skydog

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Thanks guys. It's really nice to read something and feel that people care. I've talked to my GP about getting some anti-depression meds. If this situation breaks out like I fear it might, I might need a truckload of those for my parents and fiancee.

Also, I heard of Freddie before I was familiar with this forum. I think I saw a segment on him on TV. I'm a longtime guitar player - played in various local bluegrass bands in Virginia. Not of Freddie's calibre.

My concern with the ecstasy issue was that it was somehow a trigger that set ALS into motion - I've done my share of drugs and alcohol, cigarettes, etc. I am 31 - still thinking I was invincible. I've also done some distance running - marathons, etc - plus more intense type sprinting. In other words I feel like I've got a lot of free radicals floating around in there. Add to that that I might have a genetic pre-disposition (a second cousin has ALS). Well, you can see the reason for my terror and self-loathing that this ecstasy use in April flooded my body with free radicals and pulled the trigger and started things rolling downhill to where they are now.

Al - how long since you were diagnosed? You always seem to have remarkably good attitude about everything. There is atrophy in both my arms now - used to be able to see all the veins. And the breathing thing - seems like I am getting hit with everything all at once and remarkably fast - it's been about 6 weeks since I noticed the first fasiculation....Swallowing isn't exactly difficult but it feels like liquids are going down a smaller hole. All this in 6 weeks seems incredibly fast and ominous.
 

skydog

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Beth - I'm 31. Can I still play the young and dumb card? Been playing that one for a while, believe me.:lol:
 

BethU

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I played it up until I got my AARP card. Then I switched to the "too senile to know better" card. :)
 

freddiesnetty

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I like Beth's idea...........senility is so true, or sometimes I just claim to not be able to remember,shame that doesn't work with bill collectors..........lol...........Hang in there!
netty
 

wright

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You're talking about a BiPAP . . . and walkers? Are you kidding me?

"E" has absolutely no correlation with the onset of ALS . . . NONE! The correlation with Parkinson's is viable given what "E" is and what it does . . . but Parkinson's is an entirely different beast than ALS. The etiologies are completely different and not related at all.

What you describe doesn't sound like ALS to me.

STOP surfing the internet for answers and STOP trying to diagnose yourself. The only drugs you should be taking are antidepressants and/or anti-anxiety meds because you clearly need them. Please try to relax and let your physicians take care of you and diagnose you. That's what you pay them to do.
 

Al

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Skydog. I've been diagnosed 5 years this month. ALS doesn't hit you as fast as you are thinking. You might have something but I'd bet it's not ALS. See a good Neuro if your GP thinks you need it. And forget Dr. Google. He's a quack.

AL.
 

CB1977

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Skydog- I need to get in touch with you off line. Send me a private message with your email b/c for some reason I am unable to send you a private message. This is important!

CB in Ohio
 

wright

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Oh how I would love to be a fly on the wall and listen to that conversation.
 

skydog

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I swear I'm not a hypochondriac! And a very laid back guy to boot! I admit I have become obsessed with what appears to be visible changes in my body, breathing and energy despite eating a ton....
 

wright

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No one is disputing that there isn't something wrong with you . . . but you simply can't diagnose yourself. Hang in there buddy.
 
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