Fast progressing?

[SBHarley]

Hello,
Until 3 weeks ago my brother was having IVIG and hoping for a change of diagnosis to MMN as he seemed to be responding to it.
However he then developed leg symptoms for the first time (previously it was all finger and arm) - weakness and shaking, difficulty walking.
He had a first episode where he was suddenly unable to stand or walk at all. This passed after a day.
A week later it happened again but this time he has not really recovered. He's no longer able to walk more than about 100 meters, and then only using a cane and walking slowly. He tried to work for 2 days and ended up in a wheelchair as too weak to stand.
This has all happened in 3 weeks.

Just sharing really, we're all terribly shocked by this rapid deterioration, and wondering what other people's experiences have been re progression - is it possible he's exacerbating his progression by overstraining - he's working, and he has a new baby at home and a toddler, so hard to be sedentary.
Thanks everyone.

 

[affected]

SB would you mind going to your profile (use the User CP link above in the blue bar) and adding the diagnosis date of your PALS? It really helps me as I can't remember so much these days!

I'm sorry about the rapid progression, it's very hard to watch.

It's sometimes hard to say what may or may not be speeding progression. My husband was rapid progression and I'm certain he overdid many things and made that rapid progression every more so.

 

[SBHarley]

Thanks Tillie, I'm so sorry for the loss of your husband to this terrible disease.
I have updated my profile - my brothers diagnosis was August 2016 - 6 months ago.

 

[affected]

Thank you xx

What is the situation with his breathing?

Remember this is really the big thing - many PALS live in wheelchairs a long time, so losing abilities with his legs isn't always an indication of overall disease progression.

If he was doing too much it may have hastened the legs going, but I guess now the most important thing is helping him adjust and feel loved without the use of his legs.

 

[SBHarley]

His breathing so far is completely unaffected. I have just found out he is seeing his consultant in 3 weeks so hopefully we will get at least a bit if an update then. Thank you so much again for your input. I take heart from what you say.