Unread 03-05-2009, 02:01 PM #1 (permalink)
New Member (Say Hi)
 
Join Date: 2009
City: Fairfax
State: VA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 3
mazzifer is on a distinguished road
mazzifer mazzifer is offline
New Member (Say Hi)
Join Date: 2009
City: Fairfax
State: VA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 3
mazzifer is on a distinguished road
Question ALS/MND Symptoms Worse at Night?

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.
mazzifer is offline  
Unread 03-05-2009, 05:34 PM #2 (permalink)
Very Helpful Member
 
Join Date: 2006
City: lopatcong NJ
State: newjersey
Country: US
Diagnosed: 7/1999
Interest: I have been diagnosed with ALS.
Posts: 1,168
Blog Entries: 1
patricia1 is on a distinguished road
patricia1 patricia1 is offline
Very Helpful Member
Join Date: 2006
City: lopatcong NJ
State: newjersey
Country: US
Diagnosed: 7/1999
Interest: I have been diagnosed with ALS.
Posts: 1,168
Blog Entries: 1
patricia1 is on a distinguished road
Default

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
patricia1 is offline  
Unread 03-07-2009, 10:36 AM #3 (permalink)
olly's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: uk
State: uk
Country: uk
Diagnosed: 11/2007
Interest: I have been diagnosed with ALS.
Posts: 2,791
olly is on a distinguished road
olly olly is offline
Extremely Helpful Member
olly's Avatar
Join Date: 2008
City: uk
State: uk
Country: uk
Diagnosed: 11/2007
Interest: I have been diagnosed with ALS.
Posts: 2,791
olly is on a distinguished road
Default

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.
olly is offline  
Unread 03-08-2009, 08:54 AM #4 (permalink)
New Member (Say Hi)
 
Join Date: 2009
City: Minneapolis
State: MN
Country: US
Interest: Other
Posts: 1
mpls is on a distinguished road
mpls mpls is offline
New Member (Say Hi)
Join Date: 2009
City: Minneapolis
State: MN
Country: US
Interest: Other
Posts: 1
mpls is on a distinguished road
Default

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.
mpls is offline  
Unread 03-08-2009, 09:13 AM #5 (permalink)
BLPhill's Avatar
Member
 
Join Date: 2008
City: ?
State: WA
Country: US
Diagnosed: 09/2008
Interest: Other
Posts: 209
BLPhill is on a distinguished road
BLPhill BLPhill is offline
Member
BLPhill's Avatar
Join Date: 2008
City: ?
State: WA
Country: US
Diagnosed: 09/2008
Interest: Other
Posts: 209
BLPhill is on a distinguished road
Default

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.
BLPhill is offline  
Unread 03-24-2009, 10:17 AM #6 (permalink)
New Member (Say Hi)
 
Join Date: 2009
City: Fairfax
State: VA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 3
mazzifer is on a distinguished road
mazzifer mazzifer is offline
New Member (Say Hi)
Join Date: 2009
City: Fairfax
State: VA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 3
mazzifer is on a distinguished road
Default

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.
mazzifer is offline  
Closed Thread

Tags
ability, als, balance, confused, emg, family, family member, mnd, night, paralyzed, symptom, symptoms, wrong



Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Almost 4 months of symptoms..each day feels worse branb50 Do I Have ALS? Is This ALS? 3 11-11-2015 12:12 AM
Symptoms keeping me wake a night Phins123 Do I Have ALS? Is This ALS? 6 02-20-2015 08:06 AM
symptoms worse when sick? wendya432 General Discussion About PLS 11 02-13-2014 04:59 AM
No further forward, symptoms worse Vic30b Do I Have ALS? Is This ALS? 16 06-18-2013 11:16 AM
Symptoms are worse- please advice? Wright maybe? Tiname Do I Have ALS? Is This ALS? 12 11-03-2012 10:25 AM
In Limbo with 3 DRs and symptoms getting worse. Bfloyd Do I Have ALS? Is This ALS? 23 05-14-2012 12:01 AM
4 months and symptoms getting worse ccole415 Do I Have ALS? Is This ALS? 5 02-06-2011 02:13 PM
Very Alarming Symptoms: Getting Worse Again:( intuition Do I Have ALS? Is This ALS? 4 06-04-2010 03:09 PM
Requesting help with v weird symptoms for 4 months and getting worse day by day... Simsons Do I Have ALS? Is This ALS? 1 03-18-2010 12:20 PM
Very alarming symptoms: Getting worse! intuition Do I Have ALS? Is This ALS? 8 11-04-2009 05:25 PM


All times are GMT -5. The time now is 09:52 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016