diagnosed

A fellow Mass General patient who was an advocate for PALS and trustee for ALSA. He was a brave and good man who fought a long battle ( diagnosed in 2013). He will be much missed. Deepest condolences to his family and friends

In 2012 fasciculations started. I also have pin and needles and some other little things. Went to the neurologist, he did some tests and diagnosed me with BFS. Slowly my worries disappeared and I went on with my live. I'm 42 years old now and a mum of 4 kids. But... since 2014 I got some...

Hello: My husband was recently diagnosed and we are meeting with some people next week about renovating or adapting our home. We know we need to widen doorways and make his living space wheelchair accessible, but I'm hoping to tap into the knowledge of people here. Tell us what we don't know...

I've known in my heart that this was als. 1 year ago she and I were snowmobiling. Symptoms first started around June. She needs help getting into my truck now, has slurred speech. And can not swallow a pill, but she can't open the pill bottle anyhow. We are referred to mass general. I...

Hello everyone, We live in a zone where cases of Lyme are frequent. Recently, some people of my town diagnosed with MS / Parkinson's were treated with antibiotics for Lyme and improved. One of them suggested my father see a physician with expertise on infectious diseases. I was extremely...

Hi, First of all thank you for taking your time to open this thread. I am indebted to all of you and I wish for your health ! As a background, I am 22/M , with weight around 67 kg. I have had muscle twitching all over the body starting August 2018, I felt it was very annoying. I met GP...

Finally, here. I have been a longtime lurker. I have been tempted to ask questions, but ultimately I decided to wait. And I waited for a long time. Having been finally diagnosed, I will let you know how everything began. In the spring of 2016, I started noticing some problems with my left...

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...

Hello all, I have been on this forum reading and learning, but decided to finally do my first post for my own concerns. Before I explain I'd like to say I truly see and experience the strength and knowledge you guys have whether you were diagnosed or took care of a loved one, etc. I truly admire...

I want to thank you all in advance, and let you know that I will not dispute your suggestion (and only welcome it) if you don't think ALS is a possibility in my case. I also want to let you know that my thoughts are with each of you that have been diagnosed or have had a family member diagnosed...