Lori

Hello,
My husband was on Radicava for 2 years when all of a sudden he had an anaphylactic allergic reaction to it.
Has anyone else had this?

The only thing different is that he had just recovered from Covid and then resumed his treatments.

It’s very disappointing when there aren’t other treatments (other than riluzole)

Thanks Lisa

That’s interesting John. Are you living all on one floor so you don’t have to do stairs?

I will look into the ceiling lift vs house more.
thanks!

It is confusing to know all that will be needed with this disease!
we have heard that a chair lift is only temporary once you lose upper body strength but a contractor just told us that he has one with a harness that can work.
Does anyone have experience with this?

Is this really possible? It would mean we don’t have to renovate our main floor t…[Read more]

It appears there are lots of different opinions on the genetics. We were told by the genetics Dr that they believe my husbands C9 mutation is familial now(no longer sporadic). As he has no MND in family history and only some FTD in older relatives >80 years old, his parents are getting tested to confirm this. This will take 2 months to find…[Read more]

Hi Amanda,

thanks for your reply.

it is quite confusing having been told my husband has the C9 gene mutation with no family history.

I could see some of my kids wanting to participate in research in the future but right now they are still in shock. We will definitely let you know in the future. We are from the Toronto area in Ontario, Canada.

Hello,

has anyone else been a “sporadic” ALS case, but then learn that they have the C9 gene mutation? This just happened to my husband who is only 52.

There is no history of ALS known in my husbands family and they are a large family. Grandparents living into their 80s. 2 cases of Dementia but both in their 80s.

Does this mean that my 4 kid…[Read more]

Thanks again everyone. Sounds like my husband is in the early stages of ALS and the Dr just hasn’t seen another patient present like him. Praying it is a slow progressing one.

Hugs to all of you 🙂

Thanks everyone for the sharing and suggestions.

Marianne-yes we do know about benign fasciculations and were  hoping for that diagnosis, but the EMG showed nerve damage (done by an ALS neurologist) so that is why they diagnosed ALS.

Michael- do you too only have twitching? Were you also diagnosed based on your EMG?

thank you all 🙂

Thank you- we will try that.

Hello, I am interested in this topic of fasciculations as that is what alerted the Dr to have my husband tested for ALS. First he had them on and off mostly on his left side starting in January of 2019 (just turned 50) which he attributed to mild arthritis in his shoulder and his hip replacement he had done 2 years prior. He didn’t think much of i…[Read more]