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jc35

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hello ill try to make this short but any input from pals would be much appreciated. Oct 2nd 2014 that was when I first noticed something was off with me, I noticed I had lost 15lbs for no reason. Im 32 years old 5ft 11in and currently weight 180 lbs. I know weight loss as a first symptom of MND is probably not the norm but Im just telling my whole brief story. I went to dr and they did every test none to man to make sure I didn't have cancer or aids or anything else. Everything came back negative and normal. Fast forward to April 15 2015 and I had lost another 5 lbs without trying and the knew symptom was generalized muscle twitching all over my body so i went to my dr and he saw them and sent me to neuro dr. Neuro dr saw twitching and also said I had very hyperactive reflex's throughout my body, also he saw a quivering in my muscles when I flex which he said could be weakness but every strength test he did he said I was strong, babinski test he said was neutral bc my feet didnt do anything. He ordered EMG and I had already had mri of brain, neck, and back which were all the mri's were normal. EMG dr said that during the shocking part of it the test that the signal was slightly delayed which could be from cold hands and feet and during the needle stick part i had a few twitching in upper and lower parts of my body and my feet had a few fibrillation. Went back to neuro and he wouldnt tell me much but said that I should see MND specialist which I cant get into till December at ohio state university! I tried kentucky university but the wait was just as long. Obviously everything I look up scares me but the biggest thing that makes me feel better is I don't have any weakness that I can tell but I worry the weight loss was mainly from muscle bulk loss bc I didnt have much fat on me and all my muscle look smaller then they were. I hope someone out there with this horrible disease can tell me what they think. And Im just going to sit here till december hoping nothing gets worse but since april the twitching has gotten worse and I'm starting to get and odd feeling in my throat that is always there that I cant describe but I dont believe I have any swallowing or speaking difficulties. Thanks to whoever writes me back.
 
JC, your case doesn't sound like ALS to me. The EMG results would have the answer.
The odd feeling in your throat and the widespread body twitches are not ALS.
Quivering when you flex is not ALS. ALS is when you can't contract a muscle and there is no feeling of weakness to explain it. The doctors would certainly have noticed that.
The way you're losing weight isn't ALS. In ALS, we lose weight and the muscles atrophy away only AFTER they've been paralyzed for weeks and months.
I'm not a doctor, but frankly all your symptoms reminded me of stress, not ALS.
 
Thanks for your reply that does make me feel better to hear that from someone familiar with this disease, my wife is about to have our first baby and we are building our first home so I pray it is all stress. I'm sorry about your wife.
 
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