SBHarley
Member
- Joined
- Aug 21, 2016
- Messages
- 26
- Reason
- Loved one DX
- Diagnosis
- 08/2016
- Country
- SP
- State
- Malaga
- City
- Periana
Hi, I've been posting on here on and off since my brothers ALS diagnosis last July. He's only 40 and has a toddler and a new baby only 8 weeks old. We're all devastated and I've spent a lot of time researching treatments and therapies.
His situation at the moment is that he's being given IVIG every 6 weeks - he's in the UK where this seems to be standard practice for young PALS with no UMN signs.
He's had 4 IVIGs so far. The first one seemed to produce some results (regained some use of finger and arm muscle) but since then no further improvements.
He's pinning all his hopes on a differential diagnosis of Multifocal Motor Neuropathy, which is LMN only, and can be treated with IVIG.
Last week he started to experience leg shaking and weakness, which I am worried could be clonus which I understand is an UMN sign, so would rule out the MMN hope.
I can't really talk to him much about any of this, he is so terrified he avoids the whole subject of his diagnosis most of the time, and just says he wants to be positive and optimistic.
However I'm aware that if the MMN is ruled out it will be a huge blow, and he will need support and advice, and I want to be there for him.
He's not consulting the forums at all himself, by the way.
I've seen lots of compelling info suggesting cannabis is a good option for him whether it's MMN or MND.
I've told him about this but, as with everything else, he's not following it up.
I know some posters here are using it, and I wondered if anyone could either post a reply here or message me about their experiences so that I could show my brother what other PALS have to say.
I'd be really grateful for any support with this or any other aspect of handling things and helping my brother.
Thank you all so much, brave people.
His situation at the moment is that he's being given IVIG every 6 weeks - he's in the UK where this seems to be standard practice for young PALS with no UMN signs.
He's had 4 IVIGs so far. The first one seemed to produce some results (regained some use of finger and arm muscle) but since then no further improvements.
He's pinning all his hopes on a differential diagnosis of Multifocal Motor Neuropathy, which is LMN only, and can be treated with IVIG.
Last week he started to experience leg shaking and weakness, which I am worried could be clonus which I understand is an UMN sign, so would rule out the MMN hope.
I can't really talk to him much about any of this, he is so terrified he avoids the whole subject of his diagnosis most of the time, and just says he wants to be positive and optimistic.
However I'm aware that if the MMN is ruled out it will be a huge blow, and he will need support and advice, and I want to be there for him.
He's not consulting the forums at all himself, by the way.
I've seen lots of compelling info suggesting cannabis is a good option for him whether it's MMN or MND.
I've told him about this but, as with everything else, he's not following it up.
I know some posters here are using it, and I wondered if anyone could either post a reply here or message me about their experiences so that I could show my brother what other PALS have to say.
I'd be really grateful for any support with this or any other aspect of handling things and helping my brother.
Thank you all so much, brave people.