Recent content by Momofone

I already have a child, and this decision has nothing to do with embryo selection. I’ve been in deep discussions with my husband about this already. I have been in contact with all my supports and I am still weighing out my options, but came to you all, who have more knowledge with the disease...

Hi there, My family has been burdened with C9 - we’ve lost 6 amazing people in 2 generations, so far, including my mom, Godfather, and Gramma. I’ve struggled with anxiety over this disease for over a decade now. The anxiety presents itself in the form of symptoms and I trick myself into...

It was full on slurring. I thought she was drunk or something, though she never slurred when drinking in the past. It would frustrate her completely. Read the sticky note post in the forum. It helps me greatly when my mind dives into anxiety over my 1 in 2 odds of inheriting FALS. I’ll tell...

Both my mom and uncle had bulbar onset. And with both of them, their speech was the first to be affected. Your symptoms don’t sound like ALS.

Thank you Mike, Nikki, and Lenore. Nikki, I know nothing about gene blocking. I'll have to do some research. Thanks for the info - I'll look into it! :) And again, thank you. This is such a helpful place for me. Xo

I've only ever written here in a state of panic. This time it's different. This forum, and the pinned post 'Do I have ALS?', have made me realize the anxiety that I have over inheriting FALS. I found the post last time i was wrapped up in fear, and it made me realize that anxiety was the...

I appreciate your feedback, Mike. It brings me great comfort.

That's completely fair. I don't recall inputting that info when I signed up a year ago, but I will update it. I didn't realize it said what it did. lol very strange. Thanks for your advice on not attending a walk in or ER. I will just have to wait until my appointment in late October. Seems...

Thanks for your reply, Nikki. Yes, C9orf72. Sorry, I'm in a bit of a panicked state right now, so I'm not thinking properly. I did say hands, but it's my left hand that struggles and my right hand works extra hard, which likely makes it tire as well. I am two hours out from the ALS clinic...

Hi everyone, I'm so scared that I have FALS. As far as family history with the disease goes, I've lost 5 family members, including my mom (49y/o), my Gramma (69 y/o), and uncle (56 y/o). We have chromosome 9. I've been having symptoms about a week now; I'm a 33 y/o female. In the past, I have...

Atsugi, Thank you for taking the time to address my individual points. I appreciate the feedback and my mind is a bit more at ease. I appreciate your time and I have to remember sensory does not equal ALS. Thank you for this reminder. :)

I'd also like to add that I have fasciculations, as well. I've had them on and off for 3+ years now. Thankfully, with technology, I was able to record them and show them to my neurologist. She gave me a heavy duty script for vitamin D (which I was unable to fully complete because I got...

Thank you, Nikki! And thanks for all your information. I greatly appreciate your time and knowledge! It puts my mind at ease a bit and I will try to get into the neurologist, per your suggestion if my symptoms persist. Thanks again! :)

Thank you so much for your reply. I really appreciate it. We are C9 defect. I struggle with wanting to test or not. I have a lot of anxiety over FALS. Because we don't know what causes the onset, I worry that the stress of finding out a yes, could cause the ALS to manifest, if that makes any...

...my family has familial ALS. Four people that we know of, including my mother and grandmother, have succomed to ALS, and we're working on a 5th. The last 3 days I've had weird sensations in my right foot. I noticed it for the first time three days ago when I woke in the morning. It's an odd...