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...
Good evening. After reading the stickies, I am still left with some questions. Here’s where I am at—
1. I have had body-wide twitching for about 6 weeks. It seems to be mostly in my legs now, with some in my face , back, and arms (not often). The twitching occurs on both sides. Some days...
I will try to make this brief.
*. Muscle twitching: started out in a few places about a month ago. Then increased all over. Now has decreased but in more specific spots (calves, thighs, abdomen, shoulder area). It seems almost as if the twitching is moving from lower body to...
Does anyone have a home bp testing device they recommend? There seem to be lots out there, from super cheap to more expensive. So many, in fact, it's hard to decide and I'd just be closing my eyes and picking at random.
My husband is 35 years old and has lost a cousin, an aunt, 2 uncles, (all to ALS) and currently watches his mom battle the final stages of ALS. His family carries the c9 gene.
Upon visiting with his mom over Christmas (they live out of state) and spending a week surrounded by ALS...
c9 gene anxiety
I apologize if I accidentally posted this twice. I tried posting earlier but I’m afraid I did something wrong and lost the post because I can’t find it. I’ll try to re-type my sentiments from my earlier post...
I went to visit my PCP regarding muscle twitching. I have had twitching for about...
Thank you for taking the time to read what I have going on.
I am a 44 years old mom of two adult children and a 10 year old. Last month, my boss called an ambulance and had me taken to the hospital because I was having problems talking, couldn’t swallow and couldn’t lift my leg and I panicked...
For the backstory on this thread, please see the original Familial ALS posting. Perhaps a moderator can combine these two?
We have received the gentetic testing results from my husbands brother, who had ALS-like neuromuscular degeneration combined with a family tree with many ALS and...
Hello All, particularly KarenNWendyn and lgelb and others...
Figured I may as well update my above thread regarding mainly twitching, long story short he determined it is Benign...
Hello. My husband was diagnosed ALS May 24, 2018 at age 43. It all began in April 2017 when he began having difficulty clipping his nails, left hand onset first. From there it was over a year of testing, specialist, etc, which is the only normal thing I guess about this disease; difficult to...