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Old 01-09-2008, 01:40 PM #1
joesowe5 joesowe5 is offline
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Default ALS symptoms?

Hi my name is Joe. I am new to this website. I have been experiencing some disturbing symptoms over the last 5 months. I have always been athletic, but this stopped me in my tracks. In 1995 my mother died of ALS, and it has always been in the back of my mind that I could get this disease. Back in July of 2007 I started getting muscle twitches all over my body, short brief twitches. I went to my PCP, she prescribed me Xanax, said it was stress. Well in late August, my tongue started twitching too, scared me to death so I went back to my PCP and she referred me to a neurologist. I had the usual strength tests, EEG that came back abnormal, Sensory evoked potentials. So I went ahead and had sleep test done, got fitted with a c-pap machine. This did not help anything, stopped using it. Went back to the neuro, had MRI of brain with contrast and needle EMG The EMG was good according to him, but. slight abnormality on MRI, white matter spots which he said could be a sign of MS, though I have no sensory deficits. Through all this the muscle twitching incresed, including tongue. I started to go into an emotional tailspin, and started feeling weak. Got referred to another neuro, he said nothing to worry about, that the spts in the MRI could be from smoking when I was younger. Started to feel weaker in my legs, twitching and vibrations in my legs, kind of like an electrical shock wile I was at work. In December I had another MRI of my brain, no change. Started feeling nerve twitching and kind of a fluttering feeling in my feet, mainly while standing at work with some perceived feelings of weakness. Had MRI of cervical spine and lumbar spine recently, all normal. I got referred to another neurologist, the one that helped diagnosed my mother, he said "Doesnt look like ALS to me". I am scheduled for an EMG January 22, I am so scared of ALS. My feet are really bothering me, they twitch and flutter constantly, I get small cramps in my calves while walking too. My balance seems to be off abit, though I went to the gym yesterday and my strength is still good. Ran 1 mile and cycled 3 miles then did a leg workout. Oh yea my face twitches too, I can elicit this by clenching my teeth. Immediately after this my face goes crazy. I also get tongue cramps while talking, taking a drink, etc. It is hard to go to work everyday having these symptoms. Sorry for the long post, I am just going crazy. Thanks.
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Old 01-09-2008, 03:23 PM #2
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Alffe Alffe is offline
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Hi Joe and welcome to NeuroTalk. Here is the link to our ALS forum...

http://neurotalk.psychcentral.com/sh...ad.php?t=35733

You'll find some answers and support there.

Edit cause curious caught me! LOLOL!
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Old 01-09-2008, 03:33 PM #3
Curious Curious is offline
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welcome to neurotalk joe.

i copied your post to the als forum. here is a link, so you can checkfor replies.

http://neurotalk.psychcentral.com/sh...ad.php?t=35733

i see alffe gave you a link to the main page.
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Old 01-14-2008, 04:54 PM #4
angels in the midst angels in the midst is offline
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Thumbs Down Same difficulty with docs

Quote:
Originally Posted by joesowe5 View Post
Hi my name is Joe. I am new to this website. I have been experiencing some disturbing symptoms over the last 5 months. I have always been athletic, but this stopped me in my tracks. In 1995 my mother died of ALS, and it has always been in the back of my mind that I could get this disease. Back in July of 2007 I started getting muscle twitches all over my body, short brief twitches. I went to my PCP, she prescribed me Xanax, said it was stress. Well in late August, my tongue started twitching too, scared me to death so I went back to my PCP and she referred me to a neurologist. I had the usual strength tests, EEG that came back abnormal, Sensory evoked potentials. So I went ahead and had sleep test done, got fitted with a c-pap machine. This did not help anything, stopped using it. Went back to the neuro, had MRI of brain with contrast and needle EMG The EMG was good according to him, but. slight abnormality on MRI, white matter spots which he said could be a sign of MS, though I have no sensory deficits. Through all this the muscle twitching incresed, including tongue. I started to go into an emotional tailspin, and started feeling weak. Got referred to another neuro, he said nothing to worry about, that the spts in the MRI could be from smoking when I was younger. Started to feel weaker in my legs, twitching and vibrations in my legs, kind of like an electrical shock wile I was at work. In December I had another MRI of my brain, no change. Started feeling nerve twitching and kind of a fluttering feeling in my feet, mainly while standing at work with some perceived feelings of weakness. Had MRI of cervical spine and lumbar spine recently, all normal. I got referred to another neurologist, the one that helped diagnosed my mother, he said "Doesnt look like ALS to me". I am scheduled for an EMG January 22, I am so scared of ALS. My feet are really bothering me, they twitch and flutter constantly, I get small cramps in my calves while walking too. My balance seems to be off abit, though I went to the gym yesterday and my strength is still good. Ran 1 mile and cycled 3 miles then did a leg workout. Oh yea my face twitches too, I can elicit this by clenching my teeth. Immediately after this my face goes crazy. I also get tongue cramps while talking, taking a drink, etc. It is hard to go to work everyday having these symptoms. Sorry for the long post, I am just going crazy. Thanks.
Dear Joe, What is up with the doctors today????I am soo frustrated. The neuro told me that my arthritis is eating my spine and there was nothing he could do. Told me to get with my primary and find the right meds for me to take!! Now we are talking about my life here just like you! When he tested my legs with a pin both had numbness in them and sharp areas as well as a severly sensitive knee. The pain in my rt foot is soo bad I cannot stand it at times. If I stand too long, walk or sit it starts in the bottom and works to the toes. Burns like no other and even when I get off it doesn't matter. I would have to lay flat for a long while to get relief. I have had trouble only a couple of times with twitching in my face and my tongue went numb on the right side a couple of times which scared the crap out of me. Rt now I have trouble with the right side of my head and neck. The pain is so great in my head on the lower rt side that I am constantly moaning. Im sure it bothers others but I cant help it. This started a month ago and I seen a chiro to no avail. So when I am driving I have to turn my whole body. Really wonderful!! I have essential tremors but for the most part they are under control. I hope this isnt too long for you. At least you had mri's of your brain. I haven't and I am quite concerned about my health. I have tried walking hoping something would give and yeah it did! I could't walk on my foot. bad thing is it is starting in my left now. So lets see, will I end up in a chair or what? These docs are giving me a real pain rt where it hurts!.
My ex is fighting (according to neuro) Als or Gerigs. He is in the hospital on a respirator and feeding tube. They don't know what is wrong with him. He has been complaining for a year, has lost 60 lbs over the last 2 yrs, has had mri's blood work and they say he is healthy and dieing. What is up??? Makes me sick. I don't want to see anyone die because no one could figure it out an his family don't know how to open up their mouths or our daughter. She don't know how to deal with it and she is getting married this year. It just makes me sick. So I try to fight for him and ask questions no one else will. Losing battle.
I just wanted you to know that I understand your dilemma. If I should find anything out to help you I will let you know. I am here for you if you want to talk. Ok? I am as afraid as you because I too don't know what is happening. Keep up your chin and keep on dancing like there is no one in the room Always Angel
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Old 01-22-2008, 03:01 PM #5
earthtokaren earthtokaren is offline
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I also have a friend with ALS. The electrical shocks that you have been feeling can be caused by medication. I take Paxil everyday and when I am tired or about to go to sleep, if I have not missed a dose of Paxil, once in a while I will have a "shock" and it will shake me so hard the bed will jerk and wake my husband. I will wake up instantly. It is from too much medication, I have been told, in my system.
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Old 01-23-2008, 03:48 AM #6
joesowe5 joesowe5 is offline
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Wink als symptoms

Well i had my EMG done today... Perfectly normal!!! Who would have thought. Anyway the neuro said anxiety is the culprit. This guy didn't have the best bedside manner but I believe he knows what he's talking about. Oh well, time to move on to bigger and better things.
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