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WorriedBelgianGuy

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Jun 29, 2017
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Learn about ALS
Country
BE
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-
City
Bruges
Dear,

currently I am quite a bit worried. About one year ago I had a brain zap in my head and afterwards I had fascisculations everywhere in body which steadily became more intense.
My thumb was acting very weird, when I was using it or using with a slight force it was 'bouncing' back or acting weirdly. It was not 'weak', I could use it but acted very weird afterwards (like twitching but than very strong).
I was worried about ALS, went to two different neuro's.

Got clean brain MRI, two different EMG/NCV tests on legs and arm which came clean (also on that specific thumb). Only he noted 'overreactive nerves', but was nothing to him. Fine I thought, and forgot all about ALS. The thumb also went back to normal. Sometimes had heavy legs (they were stiff) but went always back to normal within a few days to a week - no correlation with sport however.

Fast forward about 8 months later and hardly have had fasisculations. Still have them but not prominent.
In February I had that brain zap again, which drove my anxiety high and went to a new neuro but then in an university hospital. He did clinical tests with reflex tests and said it was normal - slightly brisk in both legs but that was normal according to my age (30) he said. He saw my fasisculations but said it was most likely benign. Still got a neck MRI, which came back clean.

Then I forgot about it again, but then I got throat problems (pain in left or right side). Which is mostly attributed to the reflux I have (GERD), but the ENT still ordered barium swallow.
I FAILED on that test! There was delayed epiglottis closing noticed, and due to that some contrast penetration at my vocal chords. Also a bit delayed contrast found at the valleculae (back of tongue?).

This brings me back to the anxiety and fear for ALS, but then bulbar onset. Is not that weakness of my pharynx muscles?
Does this sound like early bulbar onset of ALS? I do not have slurred speech however. I did not even know my swallow is not OK, so this got me totally surprised.

Kind regards.
 
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I think these are questions you need to ask your doctor. GERD can cause some pretty scary issues, including difficulty swallowing.

Usually bulbar onset can be identified with slurring i speech and weakness in tongue (only a doctor can test for tongue weakness or any other clinical weakness.)

What did your ENT follow up say?
 
I have a follow up with ENT about two weeks, but can go to another ENT today for her opinion. From what I have read this failed test points towards ALS or another neurological disease.

I do not understand however, my other symptoms does not look like ALS since they got resolved except the twitching...
 
There might be a lot of reasons for your swallowing to be different that what is usually seen. I see no reason to think about ALS.
 
I could get in earlier instead of the appointment in two weeks. The ENT who is the chief of the university hospital told me it's nothing to worry about. It's minor he said and caused by stress and muscle tension. I asked if it could be neurological, he said no. He checked my tongue and throat again and it looks fine to him. He noted clear stressed neck when he felt my neck.
So I trust and believe him so I will forget about ALS again. Thanks so much for taking your time to reply.
 
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