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Xfile1966

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Aug 31, 2013
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Learn about ALS
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US
State
Al
City
Decatur
My symptoms started with weakness and atrophy in my hands/forearms in 2005. Spread to my left calf/knee as well. I also have twitching and sometimes a "creepy crawly" or "numb" (but its not) feeling. Major symptoms on entire left side -minor on right. I had a normal EMG in 2006, another in 2008 and lastly 9/30/13. My neurologist believes with 3 normal EMGs spread so far apart that its not ALS but of course I'm still freaked out. Just wondering if I need to let the ALS beast go and begin looking for another reason for my problems?
 
Yes, I think you can look in another direction. I have some of the same sym ptoms and I have mitoch ondrial myo pathy. It took a muscle bio to figure it out. Good luck.
 
My neuro did mention mitochondrial something another under his breath. Where were you DX'd? I'm having problems finding someone who knows what to do.
 
Washington University, Barnes Jewish Hospital in St. Louis Missouri. They have a MDA clinic there. I would imagine a university hospital would know something.
 
I was at UAB in Alabama's neuro Dept. After he decided it wasn't ALS he seemed to dismiss me. Didn't suggest further testing or anything. Was relieved about the ALS but frustrated about the rest. Its not like I can ignore the symptoms on a daily basis....My daughter lives near Vanderbilt in TN - I may look there. If not, my son will be moving right outside of St. Louis next summer!
 
Congratulations, Xfile, for having 3 clean emg's spread over such a long period of time! If I were you, I would be feeling 110% positive that I didn't have ALS. Have you considered going to a rheumatologist to test for autoimmune conditions? Maybe something is going on that is chronic yet manageable. Have you had any MRI's or a lumbar puncture done?
 
I had an EMG done a few weeks ago. It detected sensory-motor peripheral neuropathy, and yet it didn't detect my fasciculations, which have been constantly occurring in both my calves since at least mid-May of this year. After those results, I feel that the EMG really depends on the skill of the doctor who performs it. How could an EMG have missed fasciculations which are strong enough to be visible to the naked eye?

The worst thing is that in the past month I've developed occasional fasciculations in my tongue, which really has me scared.
 
I have tons of fasiculations and none were ever mentioned on my EMGs. My EMG on 9/30 was VERY thorough. She did notate that I have nerve irritability in 3 muscles in my back but she felt they were explainable due to neck problems and sent me for an MRI. Sure enough I have 3 messed up discs, spinal stenosis and bone spurs in those areas. My neurologist was quite firm after reading the results that it wasn't ALS - and said come back in a year.

When I see my EMG doctor again in November I'm going to ask for a referral to either Emory in Atlanta or Vanderbilt in Nashville.
 
While messed up discs are indeed a problem, I am very happy that you can put your ALS fears to rest.

Good for you!
 
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