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helloall

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Jul 12, 2012
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Learn about ALS
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US
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Arizona
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Glendale
Sorry for any confusion, I posted the following in another thread then read that I should start fresh with a new thread (again, sorry about that didn't mean to double post) ...

Hello, my name is Joe and I'm a 29 year old male. I absolutely loved reading this thread as I've recently been worried about ALS. If I may, I like to post some of my symptoms in hope for feedback. For more than year I've had symptoms that match those of essential tremor (my PC Dr. Gave me this diagnosis) I had/have accepted this whole heartedly and was rather relieved to hear it. Those symptoms include: tremors in my hands, arms, neck, mouth area, core, buttox, legs and feet. I know that this pretty much covers the entire body. The tremor is only an action tremor and goes away when those areas are at rest. I have excersize intolerance (fatigue) but have managed to get around this and do it anyway. I do feel a good deal of strength while exercising it's just that I tire quickly. After my workout my tremors are at their peak. They also come with nervousness and anxiety. In addition to this my cheeks, jaw and tongue often feel sore (much like TMJ). What concerns me now is that for the past 15 days I've been twitching all over my body all day (also feeling itchy from place to place). Twitches are mostly random but linger at times in one place. Could the tremors be muscle weakness which is now followed by the twitching? I should also mention that I'm unable to flex my right trapizeus muscle which is how I've always remembered it. I noticed this six years ago, but can still shrug weights (dumbells). The last item to list would be the periodic lightheadedness I feel which happens once a day. Sorry to be the worry wart and thank all those who read this post. This forum seemed to be filled with good people who simply want to serve others. Thank you

P.s. My doctor has sent a referral to the Barrow Neurological Center in Phoenix. Just waiting for them to review the paperwork and call to schedual an apt. Thanks again
 
Hello Helloall,

Sorry to read that you've been diagnosed with this condition. The newer symptoms you are describing do not really sound typical for ALS. Seems to be a complicated case. Have you had an NCV/EMG with RNS performed? If so, what were those results?
 
Sarah,

I haven't had an EMG yet as I'm still waiting for the Neurological Center to call back. They are reviewing the paperwork from my PC Dr. and mentioned needing 5-10 business days to get that done. I too am interested in the results and am anxious to get tested. Thank you for the quick reply.

~ Joe
 
Sure. I don't think anyone here will really be able to help you without having had a neuro exam and that test, so come back and see us after you have all that done. Good luck to you!
 
The other thing is, 15 days of anything shouldn't worry you into thinking about "terminal disease" land. That's like having stomach cramps for a few weeks and jumping to cancer as what you think is going on. Hopefully the neuro can find out a little more about your situation and help you, but in the meantime keep living. Worrying is a terribly destructive lifestyle.
 
helloall,

I've had worrisome symptoms for past 3 1/2 months and went to GP, who noted tremors, and sent me to neurologist. Neurologist quickly checked my reflexes, checked my worries and diagnosed me with familiar essential tremors. I have what seems like weakness in arms and legs, symmetrical in mine, but as I am still able to do the daily activities and still golf and bowl, etc.... he said not to worry about what I feel is weakness. I also get the lightheaded feeling from time to time, along with headaches. Also see floaters in my eyes quite often.

I worried so bad I went from being extremely active to sitting and worrying for 2 months, and lost muscle, which worried me more. Tremors are bothersome, but I hope that is all I have. I test myself constantly, and still worry, as now I don't have insurance until Oct, but I've started to become active again and hang out with family and friends as often as possible. Good luck to you and try to stay positive and active. It definitely has helped me.
 
Lefty88

It's really great to hear that you are making good progress despite your worries, and congratulations on the fact that you have taken the time and trouble to offer support to another poster. That's what makes the forum so special, in my view, and I will be keeping my fingers crossed for you. I know it's not very scientific but it can't hurt, right?
 
I was so worried and I would hate for someone to worry like I did for 2 months. Neuro said I didn't have ALS and many of people on here said the same when I gave my symptoms. I know the odds are against me having it, but there is still worry. The fact I am still able to do everything is a positive and when I am active I don't notice much. If I can give any advice from my constant worry and what has made me feel better, I am glad to do it.
 
Thanks everyone for taking time to read about my situation. Had my EMG yesterday and it was clean. I am participating in the ALS walk in Scottsdale AZ this October and hope to do my part in building awareness and raise some money. My eyes have been opened and my heart touched by all I've learned and for that I'm grateful. Thank you everyone!
 
Excellent news! Thanks for walking! :)
 
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