My brother has new symptoms - legs stop working for days at a time

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SBHarley

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Joined
Aug 21, 2016
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26
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Loved one DX
Diagnosis
08/2016
Country
SP
State
Malaga
City
Periana
Hello all,
For the last 4 months my brother has been having 6 weekly IVIG treatments to rule out possible MMN, and seemed to be responding - his bicep which had atrophied is growing and he's regained use of a finger that had stopped working.
However in the last few weeks he's developed a new symptom. His legs suddenly "stop working" - he suddenly finds he can't support himself on his legs and can't walk. The first time this happened it lasted one day – the next morning he woke up and could walk again and his legs felt weak but fine.
A few days later it happened again, and again lasted a day – then he was ok again.
Then last week it happened and he was unable to walk for 4 days. He can walk again now though his legs are weak.
His consultant says this is not at all typical of ALS, as normally if paralysis sets in it is permanent and doesn't reverse itself and then come back again and reverse itself again. (sorry this is all second hand info from brother so apologies for lack of clinical terminology).
As a result she sent him for an MRI on his spine and a CK blood test. I was surprised he had not been given these before, as he was diagnosed with ALS last July, after 18 months of tests.
I'm just wondering if any PALS or CALS have had similar experiences or have any knowledge about any of this – I’ve been looking up this new symptom and the closest thing I can find to it is something called periodic paralysis, which doesn't seem to be associated with ALS, though it can be with other conditions e.g. CIDP.

My other concern is about getting help for him. He’s in the UK. His wife works full time, he works part time and is the main carer for their 2 young children. He recently had a PIP assessment where he was told that although he has been diagnosed with MND, because he at that time wasn't showing very clear symptoms, he was unlikely to qualify for financial help.
He and his wife are stressed to breaking point and I would like to be able to help them with at least getting the welfare to which they should be entitled, e.g. for a wheelchair, a carer, childminder etc.

Thank you all so much, I am aware I'm on here a lot asking for help and advice, please know that I am deeply grateful to you all for your time and input.
 

4tloml

Senior member
Joined
Sep 15, 2014
Messages
576
Reason
CALS
Diagnosis
04/2013
Country
US
State
CA
City
Suburban
I can't speak to the IVIG treatments, but I will share that my husband experiences days when he cannot walk or stand. (He's 4 years into bulbar-onset.) We never know what the morning will bring. Some mornings he can't get out of the bed--legs just won't hold him. But some mornings he can still get through the house with his rollator. He can no longer get out of a chair without a lift (his recliner) or anterior tilt (wheelchair). I've read that once it's gone it's gone, and overall we see it going, but there are days he can still get on his feet. No hard rules about how ALS progresses--seems so different person to person and even day to day in a single PALS.
 

pittsburghgal

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Joined
Jan 7, 2016
Messages
542
Reason
Lost a loved one
Diagnosis
11/2011
Country
US
State
PA
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Pittsburgh
Hi, SBHarley, and welcome. You will find a great deal of support and information here.

My husband, Frank, has had episodes similar to what you describe with your brother. Frank is mostly in a wheelchair but is able to stand and pivot for transfers. Last Sat. I tried to transfer him from the wheelchair and he could not stand at all. We waited about an hour and then he was back to his usual self and able to stand. This has happened 3 times in the past and luckily each time he has come back to his baseline after waiting before trying to stand. It has never lasted as long as you describe for your brother. Frank says his legs "stop working" and he can not make any effort to make them move.

This is puzzling to me also and I would like to know if any other PALS experience this.

Sharon
 

SBHarley

Member
Joined
Aug 21, 2016
Messages
26
Reason
Loved one DX
Diagnosis
08/2016
Country
SP
State
Malaga
City
Periana
Thanks 4tloml and Sharon, what you describe does suggest that these periodic bouts of paralysis can be part of ALS. Of course we can't know if my brother's symptoms are the same as those your PALs are experiencing, but they do sound similar.
I wonder if the paralysis came on suddenly for your PALs as it did for my brother? - the first time 3 weeks ago was just out of the blue. I had understood that with ALS, paralysis is a gradual process as muscles atrophy, rather than a switch from no symptoms at all in the legs except tiredness, to not being able to walk or stand, from one day to the next, and then back again.

Also wanted to let people know that, contrary to his expectations, my brother got his PIP funding, though not yet the mobility part as when he had the assessment he had no mobility issues, but he can re-apply for that and should get it immediately.
Thanks again people, for the welcome and the feedback, it's invaluable.
 
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