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mazzifer

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Hello - A family member has been losing the ability to walk and balance over the past 8 months. She has seen two neuros, had MRIs of everything, and an EMG. She has been referred to an ALS specialist but her doctor has said "I am not at all sure it's ALS". He just doesn't know what else it could be or how to treat her.

I don't know the details of the EMG or what she is feeling exactly, just that the thing the doctors are most confused about is this: Her ability to walk and balance is always much worse at night. Twice she has been to the emergency room at night because she is completely paralyzed and really panics, for obvious reasons. The ER doctors can't find anything wrong. After a few hours of rest, she's better and can walk out of the hospital. By the next night, she is very debilitated again.

Looking online and in this forum, I haven't found anyone who mentions a symptom like this, MND or otherwise related. Has anyone else experienced something like this? I figure once the doctors are totally stumped, you have to ask regular people.
 

patricia1

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Sep 18, 2006
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This sound alot like mg. And unlike als there are blood test. You dont walk in the morning after being paralYZED the night before with als
pat
 

olly

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hi,there is a condition called familial periodic paralysis.
this causes temporary paralysis for short periods of time.
mention this to her neuro next time.
 

mpls

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Please have her get tested for lyme disease and find a knowledgeable infectious disease doctor. I am experiencing the same symptoms as you describe...weak, numb, extremely stiff and it is always the worst at night or after activity. 50% of people who get lyme disease never have a tick related rash and some ticks are no bigger than a period on a page. You can get lyme disease without ever knowing you were exposed to a tick. I am currently on 3 weeks of IV antibiotics after testing positive for lyme. If it is lyme disease, she needs to get treated right away.
 

BLPhill

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Hi Mazzifer

I to have the same problem as your family member. I also have ALS. For me the problem is not so much night as it is the dark. My balance becomes much worse in the dark so therefore anxiety level does as well.

I do not know the reason for this but I do know it is real. The cold and the dark together is enough to stop me in my tracks. The cold makes me much more stiff, put that together with the dark, and the balance being worse, I to find myself in a panic situation.
 

mazzifer

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Thanks for all of your replies. My mother in law is seeing a specialist in Houston all this week. Yesterday he told her that he thinks it's ALS. I think she tries to do too much during the day and becomes extremely fatigued in the evening and that fatigue was causing her to have panic attacks.

I don't know if knowing what the cause is will make the panic worse or better. It's just horrible.
 
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