SBHarley
Member
- Joined
- Aug 21, 2016
- Messages
- 26
- Reason
- 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.
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.