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no doc knows what the cause is...need HELP
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An_256635 posted:
Been to Cleveland Clinic...elsewhere and no one can do anything but throw meds at this but they are missing the point I THINK......
Symptoms: stopped breathing. Normal sleep apnea. BUT LIMBS MOVE TO START BREATHING OR HE DOESN"T START!!! NO SIGNAL FROM THE BRAIN...NO MOVEMENT...NO WAKING ENOUGH TO BREATHE!!!! THAT is the concern they are all missing.
They give meds for movement but I DON"T WANT MOVEMENT TO STOP OR HE MAY NOT BREATHE AGAIN!!!
They tested ferrous (iron). Now I read they should also test
folic acid, vitamin B12, thyroid function, and magnesium levels.
BUT these are CAUSES of LEG MOVEMENT NOT CAUSES of "not breathing and having to jerk to BEGIN breathing again". That is the subject. They keep getting off the subject and want to treat breathing and leg movement. I'm not getting heard. Or am I?
On CPAP he breathes. BUT STILL MOVES. From leg movements every 7 seconds to full body seizure looking movements. But I think no REM as his eyes ache and he is so tired in the morning. He's not really RESTING. He takes OFF the CPAP and feels rested in the morning. But what IF……ONE TIME the brain doesn't send the signal to the body to shake enough to wake ENOUGH to breathe? He will die!
So they treat breathing and leg movements. BUT NOT THE PROBLEM!!!
We need help! He won't go to mayo or johns hopkins til he hears they can do something more than what's been done. Sees someone that knows more. I challenge any specialist from either place or ANY place to offer helpful suggestions. What is causing the PROBLEM…which is not leg movement and breathing. Those are SYMPTOMS.
Again cpap ON…he may die of not having rem sleep ever…? OFF cpap the signal to move TO BREATHE (movement wakes him enough to breathe) may not happen and it'll take ONE TIME and he dies.
I'm scared. I guess you can tell by my writing. Please pass this on. It's not normal sleep apnea. I need someone who understands the brain enough to help me. PLEASE. Thank you.

I don't know what Poll means. I need someone who knows more than to hand over a cpap machine and gabapentin or the drugs for movements. NOT the problem!!! Please help me find help so I can keep my husband!!!
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