Husband just diagnosed

[Flo321]

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

 

[Nikki J]

I am sorry you have to join us. You may want to read the resource series of threads. They are at the top of the general discussion section the first subforum on the main page. Do not read them all at once and you probably don’t want to read ahead too far either while you are still getting used to this diagnosis.

Diagnosed at 48/48 is super early which is a good time to start meds. I was too and have been told my early start on riluzole most likely has contributed to my extremely slow progression. I hope it is so for your husband.

re heavy legs I have never had that I only take riluzole though. If it is from radicava he may notice some cyclic waxing and waning ( or not). Has he been on it long enough to observe if that is the case?

 

[Flo321]

Thank you for the tips, I’ll read the resources slowly.

My husband has been on Rilutek since Feb19 and started his first Radicava cycle on March 22 (14 days for the first cycle). He is starting his second cycle tomorrow. Fingers crossed it will be better. Also, and this may be due to rilutek/riluzole, his potassium level is higher than normal which could also be the cause of tired legs, at least that’s what I’m thinking...

I am happy your progression is super slow, I wish the same will be true for my husband... thank you for moderating. It is great having this forum.

 

[affected]

Sorry to welcome you Flo, you will find great support here.
I can't answer the question from any experience, but other PALS may have some comments that help.

 

[lgelb]

I'm sorry you find yourself here, Flo.

Let us know how we can help.

Best,
Laurie