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ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB. |
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01-09-2008, 01:40 PM | #1 | ||
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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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01-09-2008, 03:52 PM | #2 | ||
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Hi Joe,
I'm very sorry to hear you lost your mother to this disease. I can understand your fears but unless the disease runs in your family, you are at no greater risk of getting it than anyone else. As most cases of the disease are sporadic. If your Mom , is the only one in your family ever diagnosed , you have no greater likelihood of developing it than anyone else. My husband has ALS and we have 2 children - neither of them are at greater risk of getting the disease because he is the only person in his family that has ever had it. If they did an EMG and it was clean, that is a very good sign. And it should be reassuring to you to hear from your docs that they do not feel you have ALS, If anything feels like it is getting worse or you feel as you have real loss of strength , slurring of speech, or episodes of falling , you may wish to seek the opinion of an ALS specialist. But try not to worry in the mean time about the 2nd EMG you are waiting on . As cramping and twitching occur in many healthy people too, especially in avid exercisers. Lisa Last edited by lisag; 01-09-2008 at 04:19 PM. |
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01-12-2008, 09:53 PM | #3 | ||
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Hello Joe,
I just read your recent post. I'm new to NeuroTalk , 42 yrs old, and am experiencing similar symptoms (twitching mainly in legs/feet, cramps in calf, etc). Mostly have these symptoms in the evening/during the night or if I exercise. All my tests have been negative (MRI, EMG, bloodwork) and everyone tells me I need to get over the anxiety and this could be an idiopathic issue or just benign facisculations due to shingles I had in Oct 2007. It's hard to go day to day wondering what is causing all this. Do your feet also buzz/vibrate, both of mine do on and off like an intermittent cell phone vibration, I can't find any cause for it on the net and my doctors don't seem concerned about this symptom. I hope to hear back from you and I wish you the best on your EMG on Jan 22. Lisa |
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01-13-2008, 07:28 AM | #4 | |||
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Young Senior Elder Member
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Hi LisaMarie and welcome to NeuroTalk...you might also check our PN forum for some of your symptoms....here is the link...
http://neurotalk.psychcentral.com/forum20.html I'm glad you've joined us.
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01-13-2008, 10:13 AM | #5 | ||
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New Member
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Yes I have the same thing happening in my legs as you describe. One real hot spot for the twitching is in the instep of both my feet. I could swear they show some atrophy, maybe it is just my mind playing tricks on me, we'll see. I also get finger jerks in my left middle fingerafter I grab somethingand let go, no weakness, just the finger twitch.
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01-13-2008, 11:31 AM | #6 | ||
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you may want to check out Lyme disease and other TBDs which can cause all of those symptoms and be seronegative.
Get tested for Babesiosis, Ehrlichiosis as well as Lyme. If you have one you tend to have more and just be sero- with them. All can cause those symptoms- Best wishes, Sarah |
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01-17-2008, 01:03 AM | #7 | ||
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Hi Joe,
Sorry to hear you are having problems. To tell you the truth, i have the buzzing, twitching thing too (feels like a cellphone on vibrate implanted in my left leg), but i also get exercise fatigue and cramps. the twitching seems to be all over...right now my hands are kinda clumsy...and i noticed trouble going down steps but, not up. had an MRI that showed abnormal white matter, but the neuros dismissed it and told me i had a conversion disorder(nut case)...i got a second opinion and had a NcV/EMG done and told the new neuro about the buzzing...they told me i have muscle atrophy in the left leg and polyneuropathy and that the buzzing was small fascicillations. i'm scared about the atrophy...how old are you? do you have a physical job or play sports or any trauma (car accident, ect.) recently? |
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