confused

Hello everyone. I come back with an update about genetic test. They found CACNB4 gene mutations on my father with CACNB4 variants: NM_001330115,: exon6,: c.G518A,: p.R173Q, Chr2. That's a autosome dominant and I'm 75% able to carry a mutant. I'm currently waiting for my own genetic test results...

Hi Im 48, male from the UK. I'll keep this short. Im worried sick i have als. Around 6 months ago i noticed knee pain when bending in both knees. Around a similar time i noticed it needed a bit more exersion to raise from a chair. It was the knee pain that hurt though when raising rather...

First let me say this site and the folks who help are amazing. I hope I have that much empathy in charity in me. Question. I have had two conflicting ncs / emg’s - both ncs showed sensormotor poly neuropathy of axonal type. But here is the carrot. First emg showed increased insertion...

Thank you in advance for reading my post and apologies if some of my questions are not consistent with the sticky notes. I am 27, male. For the past four months I have perceived weakness and feeling of numbness in left arm and leg which tend to come and go. The numbness is usually more...

I apologize if this has posted twice, I couldn’t tell if it did the first time. For the past two months I have been experiencing some very concerning symptoms, and so naturally I went online and it said it could be ALS. It started out with very bad cramping in my whole body (with occasional...

Only now is it possible to write that my sweet husband of 34 years has passed....His home going service was November 17 and I am still numb and crying....But most of all I am still confused as to why he developed ALS and how....Ronald was a beloved physician whose journey was made easier only...

Hello, I want to share with you our story in full. There are bits and pieces all over the forum, but I wanted to gather everything together. My father received a final diagnosis of MND yesterday. My father (60) started experiencing symptoms quite a while ago, around the winter of 2016. He...

First off, I want to thank you all so much for the invaluable wisdom so many of you have shared here. You have helped so many (including me) through this disorienting process, and I really can’t thank you enough. This is my first time posting, and I feel like I have nowhere else to turn. My...

I’ve read the sticky note that said that this is not a progressive sensory disease. I felt immediate calm when I read that. But then personal experiences of people with ALS seem in line with what I am experiencing. For about 10 days I have experienced sudden muscle weakness. I am still a 5/5...

Hello everyone, I Am brand new to this forum but I would like to take a minute to say thank you all so much for what you are doing to provide support for PALS, CALS and people like myself who are seeking knowledge and peace of mind. I cannot say that I understand all that you're going through...