Hey Annie, thank you so much for your reply.
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Fasciculations are not a symptom of MG, but can be one of thyroid disorders. Or electrolyte disturbances. Or other neuromuscular disease (yeah, I know you probably thought of ALS).
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My doctor did mention that not drinkig enough water could attribute to the fasciculations. I'm a big 'water drinker' so I assume that rules out the possibility of it being electrolyte related. As far as an MND like ALS "Oh boy" I definitely was a little bit of a basket case in the beginning as the onset of my neurological symptoms (fasciculations + weakness) seemed to line up with textbook symptoms of MND like ALS. After some mild research, I realized that ALS is almost definitely off the table. Mainly because in ALS weakness doesn't ever get better. For me it's been bouts of fatigue that come and go.
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So, when you were in the hospital with breathing problems, did any of the genius doctors think to check your oxygen saturation? And not only while sitting, but while walking?
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They monitored my oxygen saturation while laying but not while walking. Initially in the attack, minor exertions like sitting up or turning over sent my oxygen level low enough to sound an alarm. 6 Hours later I walked out of the ER though with minimal fatigue.
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Did they think to do a beside spirometry or a peak flow meter reading?!
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They did neither of these tests, they performed a CT to rule out an pulmonary embolism and ruled my case as anxiety when the CT returned normal (though showing an enlarged liver).
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Ativan helped? I hope you won't be offended by this, but are you generally a nervous person?
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I definitely became one when the symptoms began. Though the Ativan reduced the fasciculations by 90% I still have them daily with long lasting cramps (days).
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Do your eyelids droop? Look in a mirror and check. Do you have double vision? Hold your pointer finger at arms length and then bring it in slowly to your eyes.
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Thank you so much for these helpful tests I can do. From my perspective in the mirror, my eyelids are perfectly symmetrical. It's interesting that you mentioned the double vision because on that day of the big attack, just before it happened I had extreme double vision. I was literally commenting to a family member about how I was seeing double just before I realized I wasn't getting any oxygen. That being said right now I don't have double vision.
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It couldn't hurt to ask the endo to check your vitamin B12 and D, too.
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Though I haven't yet been seen by an endo, my PCP ordered a blood test that included B12 and D and they both came back in normal levels.
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You probably have more than one thing going on, which means needing more than one specialist. The most concerning thing is your breathing and the thyroid issue. Don't hesitate to dial 911 if you can't breathe well, okay?! And then ask them to do the above breathing tests!
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Thank you for saying this, honestly the way I was treated might have kept me from making the call if it happens again. I most definitely will call next time.
I also wanted to mention that since the beginning of my symptoms, I haven't had a solid bowel movement. I read that this might have some relation to my other neurological symptoms. Most of the time it is liquid and pale brown almost yellowish. Sorry for the graphic detail and thank you again for taking your valuable time to reply to me here.