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Wmjsmith

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Jan 12, 2017
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Learn about ALS
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Us
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Nd
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Bismarck
I am not diagnosed ALS. In July I began having swallowing problems. Diagnosed esophageal motility disorder or unknown origin. I've lost 60 pounds to date. Very poor nutrition as I have a hard time getting anything down including liquids. Blood test achr for myasthenia Gravas was 0.0. 3 weeks ago Mayo Clinic did full blood work ups all within normal ranges. Primary doc noted no tongue abnormalities or fisculations. 4/4 strength on exam. Negative Hoffman and babinski normsl refleces. Barium swallow was normal.

I have had jaw pain for around a year. Dentist said tmj.

So I've been dealing with that but no other symptoms until 3-4 days ago I became very weak. Pain when walking in both quads. Both biceps have the feeling after a strenuous workout but I haven't done anything. Yesterday right side abdomen pain. Today it's back neck and shoulders. Noticed random twitching all over. Left forearm and hand feeling off/weak. I have a hard time breathing when I lie down.

I can stand on my toes, walk on my heels, open jars both hands, do push-ups, jog short distance, pickup items of various size and weight fine.

My muscles are clearly diminished in size from this summer. My wife says I look like a cancer patient. I have clearly lost strength.

So what do I make of this sudden onset of weakness and twitching? I've read your primer on als and don't know what to think. I clearly have abnormal weight loss and muscle reduction. I have twitching but it's random and all over. I feel weak but passed clinical review 3 weeks ago. What do I make of this?
 
Have you had an EMG?

Has anyone suggested a feeding tube? Malnutrition alone could make you weak/cause atrophy.

If your Mayo team is just letting you twist in the wind as you imply, I'd find either another team or another institution.

Best,
Laurie
 
No Emg. I did get a neuro appt for next Monday. Hoping to get more direction then. Thanks.
 
Did they check your Vitamin D levels? Mayo did not check mine. If you aren't getting enough calories that will cause weakness and muscle wasting. Why no feeding tube?
 
Yes my vitamin d was very deficient. Doc didn't think this would cause my issues. Having cramping muscles appearing everywhere now with lots of fiscullations. I'm choosing to see that as anxiety for now. Just can't swallow.
 
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