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hmj82

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Learn about ALS
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PA
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Pittsburgh
Hello,

I've posted twice previously with some scary symptoms that I've been experiencing since June 2015. I'm a 34 year old male. I haven't had a day in the past 11 months where I'm not experiencing one or multiple of the following symptoms daily (sometimes all the symptoms throughout a given day):

Brain Zaps - Very first symptom I experienced and stopped after the first three weeks. Wasn't on any medication at all that could've caused these zaps. Then all the symptoms listed below have happened.


Twitching - Full body (literally just about everywhere you can think of) since June 2015.
Legs - Tightness in calf and thighs. Sometimes the feeling is tightness or like the muscles are going to cramp up but they do not. Walking at times feels very uncoordinated and stiff.
Arms - Migratory pain in both arms. Felt in wrists, forearm, and fingers intermittingly.
Mouth - Periodic dry mouth. Recently almost all day tightness in roof of mouth (palate area) and throat. Haven't had episodes of choking on foods or liquids just the tightness makes swallowing labored.
Joints- Seems like my joints have been cracking/popping a lot. Everywhere on my body. Not painful.
Phlegm - A lot of mucus in the back of my throat and clearing my throat.
Speech - Can move my tongue around but my speech doesn't seem to be normal.
Neck Pain - Pain at the base of my neck in the back.

To date, I've had 2 clean EMG's (last one was done in September 2015 by a neuromuscular specialist at AGH in Pittsburgh who did my right leg, right arm, and right side of neck). I've had normal reflexes, babinski, hoffman, and passed strength tests in all neuro exams. Last neuro appointment in January 2016 was told that they want to monitor me and will see me again six months later.

Please know that I'm not trying to annoy anyone her by posting again. I certainly do not want to offend or anger anyone on this board. I respect and admire all of you. I apologize if anyone is offended by me posting again I just don't know where to go from here. I've seen so many different specialists and had so many different tests done but yet no answers. Until something can be found or a name put to the way that I feel I can't help but not worry about this being ALS. Just found out my wife is pregnant so my worry has gone into overdrive. Lost my dad when I was three years old and my biggest fear is that happening to my kids.

It seems like my symptoms are full body but don't have weakness or atrophy.

Could ALS strike the full body and then start shutting functions down one by one?
Has anyone heard of brain zaps being the very first symptom of ALS?
Eleven months into this are my chances extremely low that this could be ALS given no weakness?
Does this sound like an UMN variant of ALS given the tightness in legs, mouth, and throat?
Do you think I should request another EMG?

Thank you again
 
Please understand. There is not a single person with ALS on this site who has a clean EMG or neuro exam. You have no weakness or atrophy. There is no reputable neurologist who would diagnose this as ALS. Please seek help for health anxiety, this can cause a lot of symptoms. I would trade places with you in a second.
Vincent
 
H,
Your sx pretty much boil down to "feel" and "seem."
As Vincent said, that's not what anyone here is limited to, UMN, LMN or both.
I would go back to an internist, and discuss what you can do to not feel this way and have these fears. A pregnancy (congratulations!) is enough drama for the two of you, I'm sure. As you say, a child is a huge responsibility, one that you will want to bear and enjoy at your best.

Best,
Laurie
 
It seems you are going back in June, when your six months are up. It's May now, June is just around the corner.

Until your next appointment, concentrate on your wife and unborn child. Pregnancy is a very special time. When you look back on this time, make sure they are happy memories.
 
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