[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)

[Lori]

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 to be my husband’s living space.

thanks

[Lori]

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 out.
Genetics Drs told us our 4 kids have a 50/50 chance of getting the gene mutation and then 100% they will get either MND/FTD but the age of onset is not known. So we will wait to confirm if the genetics drs are right and my husbands C9orf72 mutation is familial and did not mutate on its own.
ALS sucks!

[Lori]

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.

[Lori]

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 kids could also inherit the C9 mutation? And what would be their risk of getting ALS?
this is what keeps me up at night!

we just found this out and don’t see the geneticist for a month!
my kids are between 18 and 22.

thanks

[Lori]

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 🙂

[Lori]

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 🙂

[Lori]

Thank you- we will try that.

[Lori]

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 it until July 2019 when his Dr noticed at his annual visit. The fasciculations have intensified to his whole body most of the time. Then by the end of November he was diagnosed with ALS based on an EMG test done by the head neurologist at Toronto general hospital and then again in January 2020 by Toronto Sunnybrook’s ALS clinic(Canada). Other than the fasciculations he hasn’t experienced Any weakness and it’s been a year since they started. The neurologist at the ALS clinic says he hasn’t seen a patient present with just fasciculations without weakness by a year. I am wondering if this is because we are in Ontario Canada and have a small population they are looking at?
Has anyone else experienced this? Do you think he is just in the early stages of ALS? I just don’t know what to think or what to prepare for.

Thanks for reading 🙂

[Lori]

Thanks Lisa and Nina

[Lori]

That’s interesting Jim. 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!