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isle667

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Feb 6, 2009
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Learn about ALS
Country
ny
State
new york
City
valley stream
I have been posting here for a few months now, and everyone has been so nice and helpful. My Als scare comes and goes, my journey started with a twitch in my left leg. Then twitching spread to my whole body. I have experienced a great deal of aniexty with this as well, which i think causes most of my symptoms ( or at least i hope). I have experienced fatigue as well. Ive seen my neuro a few times, ive had a brain mri, that came back normal. Ive discussed my muscle twitching with my neruo and he dismissed an emg, he said your too young to be considered for ALS. I am 23 by the way. I started twitching in december, and i really have not stopped, and the worry still goes on. I do get pins and needles, and now these darn swallowing problems. I get horse it comes and goes, sometimes i feel like i cant swallow, but that comes and goes. I twitch in my neck and throat area. And sometimes i catch a cramp or a pulling muscle in my neck, but i believe thats always happened to me, but now i think about it more often. Im schudule for blood and urine tests next week. I can still manage to do exercises, run a few miles, jump rope etc. I have lost sleep over the issue of my mind never stops running, with this constant worry about the fear of ALS. My question is i started twitching 4 months ago, would i have seen a change in things i can do. Would twitching all over then some throat issues relate to a different onset. Should i ask my neruo for an emg? Even though he does not feel i need one. I had my reflexes tested about 4 months ago, they were normal. Could they have changed within 4 months or is it highly unlikely? I know age is on my side at least. Its weird ill get this really bad fatigue for about an half hour at some points and then ill feel normal and fine. I dont experience cramps at all, nothing that is not normal at least. I am sorry im posting again its just my neuro does not think i need an emg by stating my age. When i stick my chin out and strain my neck on purpose, ill feel a pulling muscle sometimes, just to test my self. I dont slurr my speech and my tounge does not seem to have any issues. Any feedback would be appreciated, thanks
 
Hey Isle667

If it helps, I get twitches from exercising, I gag and can't swallow when I brush my teeth, I can't sleep and am very fatigued all of the time, I feel sick to my stomache often....

...and I'm not the one that's being tested for nmd...it's my husband.

Mine is from stress and anxiety.

In his case, with his twitches....it's very obvious when we have a bad dr. appt that stresses him...his fasciculations are very pronounced and very widespread...when we have hope and calm down...the facsciculations are mild and stay within atrophied areas. Much of it is stress and anxiety.

If you really feel like you're having progressions and something is seriously wrong...just keep an eye on yourself and keep a diary...but...don't go "creating" symptoms by "straining your neck" or other such actions. It only confuses you and anything that may/may not be happening.
 
isle, I am really trying to be helpful here - you have to get past your anxiety!

I started twitching 20 years ago and went through anxiety then, and calmed down after seeing a neuro. Then started devloping other stange "symptoms" 6 years ago and convinced myself I had ALS - gagging, imbalance, weakness, etc. After going to a local neuro, Emory, and Mayo I calmed down again. The anxiety made things MUCH worse. I literally convinced myself I was really weaker at that time, missed a bunch of work, etc. (I wasn't weaker). After about 3 months of that I had to get along with life.

Here I am 6 years later with progression of symptoms to some degree (won't list them all) and still no diagnosis or even a hint of anything wrong with clinical exam and EMG about 6 weeks ago.

If it will calm you down, insist on an EMG. If it won't, it is money wasted.

I've simply decided to live and see what happens as long as I can live normally and do most of things I love to do. If it is ALS I can't do anything about it and stress only aggravates it. If it is something treatable, it will show up soon enough.

I know it can drive you crazy, but really you have to get focused on something else.
 
tkmj and tag, thank you guys both so much for the advice and input. You are definitly right i need to get over this aniexty, im only 23 and im so worried. I am going to try and look past it, and focus on something esle. I just got back from running 3 and a half miles and played some handball, after handball i was weak but when i sat down i felt better. The funny thing is i play college basketball so i run and work out a lot of i notice things on my body more and how i am feeling. Ive been twitching for months now and can still run miles and play so i guess ill be ok, or at least i hope. Thanks for the advice im gonna try and seek some help for this aniexty it really creates such bad physical side effects. You would never think it.
 
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