Hi everyone,
My husband was diagnosed with ALS two months ago today, on February 18, 2021. We are based in Switzerland (French-speaking side) but we both lived in the US (Los Angeles) for a significant amount of time, 20+ years combined.
I don’t have a particular question - actually I have so many - but as I am still processing this diagnosis, I just want to say ‘hi’ and introduce myself.
As I like to always look for the positive in everything (and granted it’s almost impossible to do here), I am at least feeling fortunate that we live Switzerland and as I came to find out, Switzerland is only 1 in 5 countries that offer Radicava. So, my husband is on Rilutek and Radicava.
I don’t have much info on his particular condition, as the doctor gives us limited info, but it seems it’s hard to know details as there are so many unknown. My husband always tells me that my best and only indication should be him, basically how he is doing. And thank goodness he is currently doing well, mostly. He scored 48/48 on the scale.
What currently worries me the most is that he has been experiencing ‘heaviness’ in both legs. Is this a side effect any of you guys have been experiencing with either Rilutek or Radicava? We think it’s a side effect rather than the progression of the condition itself because he just started experiencing this when he started Radicava...
Anyways I have been writing so much, I’m not even sure any of you read up to my question
I am also slow at asking questions because I might be afraid of the answer... if you have a response to it though, please share.
Anyways guys, I really joined this forum looking to get but also give general support. Thanks for reading me up to this point all of you who did.
Nice to meet you and speak soon.
Flo321
My husband was diagnosed with ALS two months ago today, on February 18, 2021. We are based in Switzerland (French-speaking side) but we both lived in the US (Los Angeles) for a significant amount of time, 20+ years combined.
I don’t have a particular question - actually I have so many - but as I am still processing this diagnosis, I just want to say ‘hi’ and introduce myself.
As I like to always look for the positive in everything (and granted it’s almost impossible to do here), I am at least feeling fortunate that we live Switzerland and as I came to find out, Switzerland is only 1 in 5 countries that offer Radicava. So, my husband is on Rilutek and Radicava.
I don’t have much info on his particular condition, as the doctor gives us limited info, but it seems it’s hard to know details as there are so many unknown. My husband always tells me that my best and only indication should be him, basically how he is doing. And thank goodness he is currently doing well, mostly. He scored 48/48 on the scale.
What currently worries me the most is that he has been experiencing ‘heaviness’ in both legs. Is this a side effect any of you guys have been experiencing with either Rilutek or Radicava? We think it’s a side effect rather than the progression of the condition itself because he just started experiencing this when he started Radicava...
Anyways I have been writing so much, I’m not even sure any of you read up to my question
I am also slow at asking questions because I might be afraid of the answer... if you have a response to it though, please share.
Anyways guys, I really joined this forum looking to get but also give general support. Thanks for reading me up to this point all of you who did.
Nice to meet you and speak soon.
Flo321