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johnrob

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May 23, 2020
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Learn about ALS
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State
NC
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Greenville
Hello everyone, hope you all are doing well and staying safe during this time. You all are in my thoughts and prayers. But I have a serious question regarding somethings that are happening to me currently and I would really appreciate anyone's undervalued advice as it could help put me on the right path.

The past month I've been experiencing body wide fasciulations. Started in my calves and thighs after I worked out. Then the next morning my calves were super tight and my legs felt super weak and uncomfortable as like they were noodles. So I brushed it off as over use maybe not drinking enough etc... I felt the twitching in my calves and thighs and Achilles, I feel it in my triceps, sometimes my biceps and forearms, my face, hands... My lips. I was also having some pain in my hamstrings and my glute/butt area, and some pain in my calfs like I was going to cramp but never did. My legs feel super weak when I walk up stairs. So I went and saw my PCP we did blood work everything was fine, we did a neurological exam and he assured me everything was fine. No MND or anything like it. He diagnosed me with a pretty bad case of anxiety, mostly health related and sent me on my way.

So of course I went to a neurologist, we did an extensive neurological exam and he didn't find anything. I had some briske reflexes in my patella knee area, he said since I was young and in good shape and they were bilateral it was meaningless. He assured me MND doesn't start in a couple of weeks and sent me on my way. He said I had pretty bad anxiety and told me to keep taking the meds and they paired me with a therapist who I see twice a month. So of course that wasn't good enough for me. I seeked another neurologist. We did another neurological exam, he thought the twitching was bengin (BFS) and he scheduled an EMG for me.

I did the EMG with the NCD we tested both my legs, my back, my right arm and hand, my neck and everything was clean. Does it matter we didn't do my left arm? He said I had slightly prolonged Fwave latencies in my lower extremities. He said it was because I was tall and had longer limbs. I'm still worried I have a MND. He assured me the twitching in MND represents the muscle atrophing and the EMG would have shown that. He also said I'd be the first case of mnd in 35 years he's seen that started with twitching first but the EMG would have shown the atrophing of the muscle or motor neurons. I'm super nervous. My 3 neuros assured me I didn't have a MND and the EMG would have shown it and it's never too early to do one. Any advice would be appreciated. They think the twitching is bfs related from overuse and anxiety. My twitching also gets worse after I exercise
 
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