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scared1

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Feb 4, 2013
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11
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Learn about ALS
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US
State
UT
City
salt lake city
First I would like to say I am new. I hesitated asking questions here because I have been putting my time researching into other possible causes and so far they have all been ruled out. I know there are many people that ask questions here because they get a twitch one day and have no real reasoning to suspect als , just paranoia and hypercondria. So, I will start from the onset of my symptoms and how they've changed and so fourth. In winter of 2010 I began using heroine and became heavily addicted smoking it off tin foil, never injecting. Around the same time I began using heavily I was working and noticed my left arm got fatigued more easily but I just blew it off. Later in July I checked myself into detox at a facility at the university of Utah and have been clean ever since.(age 20) When I got out of detox is when my symptoms began to show. I got this bone chilling anxious feeling all over my body. I decided I was probably still withdrawling from the drugs. This feeling never went away. I also began getting weakness in my face which made it hard to speak sometimes and because of the malaise I felt very fatigued. I also developed a difficulty breathing. It felt as if my respiratory muscle wasn't contracting properly and I got a very irritating feeling as if I didn't have enough oxygen so I have to deeply inhale sometimes never achieving a satisfying breath. I have always had problms swalloing and food always got stuck in my throat, however it seemeduch worse. Chewing was hard because my jaw would get tired. Then sometime during September 2011 I woke up and realized BOTH my arms felt incredibly fatigued and weak from the simplest tasks. I got an appointment with my GP and a Neuro shortly after. They both told me I was fine and did hundreds of blood tests. My Neuro exam was fine. No spacticty, negative bbabinski. Everything normal except slightly elevated Cpk. However I am active so it was considered normal. So that summer I didn't really notice the weakness. I'm not sure if I got used to it or it just went away. The only thing was the intense malaise which could be unrelated. Then, in fall I literally woke up and got the same weak feeling in my arms and with that, the breathing issue came back. Over the next week I progressively got worse. The weakness was also in my left ankle and then I felt it in my left knee. My lower back then joined and then my neck. With this also came twitching which seems to get worse while resting. No cramping though. Not even if I rode my bike 30miles (i enjoy mtn biking and I ride quite heavily). So I made an appointment with my GP and then scheduled a emg/ncs of my arms. The Emg and ncs was clean except mild carpal tunnel. I realize that many people say "clean Emg! You don't have als!" Well that is only sort of true. Ive read from one pals with bulbular onset had a clean Emg. I've read many things about inaccurate emgs. However I have weakness in my arms which is what they did the emg/ncs on so I would hope that it rules out als. So now I am still having this weakness and I am always dropping things now. The twitching is mainly around my joints? Don't know if anyone maybe experienced this? I get a weird sensation while walking, it feels as if my left leg doesn't move correctly. My eyelids also feel like they do not blink in sync. My fingers feel weak while typing, I just basically feel like I'm falling apart. So I basically have a few important questions.
1. Has anyone had a clean Emg then waited and got another one that's dirty?
2. Can any diagnosed patients relate with these symptoms
3. How long does it take after onset to loose control of an extremity
4. Any suggestions?

Thank you so much for your time, and godbless those of you who are diagnosed pals. My heart truely goes out to you. I appreciate your help and I really don't want to be just another paranoid hypochondriac on here. I am asking for hints and things to rule out als. I realize I am young but als in the early 20s is not unheard. Stephen hawking was diagnosed at 21 and many others as young as 15.

Important info
Age 20 (21 on April 6th)
Seems to get worse in winter
Clean Emg
Had many blood tests and an MRI of my brain and cervical spine


Thank you
 
You forgot to add in your "important info" that you can ride a bike for 30 miles.
 
You forgot to add in your "important info" that you can ride a bike for 30 miles.

Well I should have said I that I could ride a bike for 30 miles. Now my ankles/back/neck are far too weak
 
Sweetie, I'll be kind and say that nothing you've described sounds like ALS. You may have made some bad decisions like many of us do during our lives....but it doesn't equal an ALS diagnosis. How many years do you want to invest in the "possibility" of receiving a dirty EMG following a clean one. The fact that you could actually ride a bike for 30 miles is pretty amazing.....I'd love to see my PALS be able to GET on a bike. Get off the internet, trust your doctors and above all else----enjoy your youth and and health! Take care of yourself and quit stressing!

Ruth
 
Ok thank you so much. I'm sorry for being a bother. I've been having these issues for almost 2 years now and I am completely miserable. I will try to stop worrying and be happy that I had a clean emg. Also I apologize for how poorly my grammar was in my post lol. I wrote it in segments in my free time at work. I truely appreciate your words though. I understand how you deal with people like me posting on this forum every day. I'm just terrified seeing how this diagnostic nightmare of MRIs needles and all sorts of unpleasant things has told me absolutely nothing. My doctor is telling me chronic fatigue syndrome which seems to be a bullshit diagnosis according to my other GP.
 
If you have had these issues for 2 years, if it was ALS, chances are you would not even be able to walk.
 
Hello

While chronic fatigue syndrome may be possible--I'd ask about fibromyalgia. Despite medically documented conditions, there are still those docs out there that don't believe in either one.

Nothing in your symptoms sounds at all like ALS. I think you can put that fear to rest.
 
I have no problem at all with you asking questions. It's a happy day for me when we can reassure someone that their symptoms don't fit ALS.
 
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