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fr4racing

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Learn about ALS
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Hi everyone, I have been reading through the forums for a while now and decided I needed to post .. I have read so much conflicting information that its making my head hurt .. I will try to keep as short as possible..

About 3 months ago out of nowhere I had a muscle spasm /twitch above my eyebrow that was so steady and consistent it almost looked like a pulse .. It was going on non stop for 3 weeks before I made a doc appt.. During this time, but at more random the inner archs of both feet would muscle twitch (looked like the crawling worms all over) .. This still comes and goes, but is present most of the day..

Doc ordered some basic blood work as well as some vitamin deficiency tests that came back normal.. Also wanted to send me to a neuro, but they were 5 months out (still have appt in march 2017 scheduled).. So in the meantime he sent me to a spine/sports type doc who performed a lower EMG and a nerve cond study on me and said everything looked normal..

Fast forward 3-4 months to today... Twitching feet still happening, eyebrow twitch is gone, but will pop up at random every so often, but go away in a few hours.. But now just about every part of my body will twitch, but usually only lasts a few minutes at a time then seems to go somewhere else.. Its freaky, my wife and I can be sitting on the couch and my arm, leg, chest ,any part of my face, or whatever muscle just starts jumping around like crazy...

Parts of my body feel very crampy at time , (alot in my neck area) hands, feet ,etc, but no real weakness so far that I can tell... I have been back to my family doc 2x in the last few months and he still does not seem concerned with any type of neuro disease ... Its frustrating that I have to wait this long to see a neuro, but this is where I am at..

I have read stories about ppl saying the feel crampy and sore with ALS like when the get up in the am, they feel like they have been run over , and thats how I feel honestly, and then have read from others that its just pure weakness, not really any pain..... So I have no idea what to believe... Can anyone make light of my situation?? Opinions/ suggestions would be very helpful.. I am 37, have a 2 year old and a 4 month old and this situation has me worried to death... thanks everyone!

***Also would a spine doc be trained to know what to look for on a EMG regarding ALS or other mnd's? ***
 
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So you twitch. Twitching is so specific to so many conditions as to be not diagnostic of anything. It could be anything from vitamin deficiency to dehydration to plain old stress. ALS is characterized by weakness with no other cause. So relax, pour yourself a drink and enjoy the holidays.
Vincent
 
Appreciate the response ! I guess since the docs so far do not really have an explanation it concerns me ... As far as the spine doc doing the lower EMG , should that suffice , or should I be pushing for another one from a neuro doc ??
 
Hi

No weakness is really good sign and all of your other symptoms could be caused by other benign things, I can understand it's worrying for you but nothing you have described could only be caused by ALS. Twitching can be caused by so many different things diet stress BFS etc.

As far as the EMG goes, the guy doing it may not have been an ALS specialist but if he saw abnormalities he didn't understand he would have referred you onwards. Your results were normal and they would not have been if it had been ALS. Normal results should be very reassuring.

Wait until your neuro appointment, they will schedule an EMG if they think it's warranted. When you go in have a list of all your symptoms with you, ask what could this be rather than is this ALS. If you try to direct the diagnosis process it can delay things. Keep touching base with your GP in the mean time and if the worry is getting to you ask them for advice on how to cope with it while you are waiting for your appointment with the neuro

Good luck
Wendy x
 
An EMG will pick up denervation before you become weak. A new baby means lots less sleep, another cause of twitching. Wait to see the neuro, but in the mean time relax. Christmas with kids is a blast. Enjoy!
Vincent
 
Thank you both for the insight ! I appreciate it greatly !
 
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