genetic

Hello, This doesn't exactly fit this topic but I wasn't sure where else to put it. Moderators, please delete or move as you see fit. I joined this forum two years ago when ALS seemed to be where things were going. Now it is clear that it is NOT ALS which is a great relief. Symptoms have...

Hi. Just wanted to let you know that my husband will be starting the Tirasemtiv trial next Monday. The first 2 weeks are open label. I will keep everyone updated on how he does. We are also going to NIH on July 27th to volunteer for the HERV-K. Natural History Study. He will be donating...

Has anyone in the US undergone genetic recently? Sometime during the diagnostic process, one of the neurologists I saw suggested genetic testing. The cost, at that time, was prohibitive--$35,000 or more. This was probably about 2009. Has the cost of this testing come down?

We were diagnosed this morning. As I think some part of me has actually known since April 2nd when he came and showed me that his left toes did not rise up as high as his right (drop foot) my husband was told he has ALS. We had a whole clinic day actually, and Brian is very interested in...

Hi everybody. I am relatively new to this forum and hope you find this message well. To give you some background about me: I am 29 year old Asian male. For months - and maybe years - I've noticed twitching in my legs, particularly in my thighs. I kind of ignored it as I assumed it was...

Hey everyone, I was just diagnosed today with upper motor neuron disease. I have been sent to a different team of doctors to get genetic testing to rule out HSP, so if it's not that, then I'm looking at PLS. I'm only 28 years old, and from everything I've read about PLS, a diagnosis is...

I am excited to announce the latest research project of SciOpen Research Group. It's an entirely brand new subject that nobody has tried addressing before. It took me over two years to develop to this point. We are creating a brand new genetic mouse to do this proof of concept study. You can...

13 People Identified As Immune To Genetic Diseases, But Researchers Can't Find Them | IFLScience Apologies as this is not directly ALS related. I find this fascinating and wonder if this kind of thinking may shape gene therapy in the future. Eg are there specific mutations that could protect...

Hi all, Well, as my title suggests, I'm headed back to the National Institutes of Health tomorrow in Washington, DC. As many of you know, I was originally diagnosed with the upper motor neuron disorder, hereditary spastic paraplegia, but a change in symptoms, no family history, and ambiguous...

Are there any cases of ALS that you guys know of that have been fatal within seven months of onset of symptoms? My mother was diagnosed with ALS formally on Monday, after initially having a diagnosis of multifocal motor neuropathy in early October. Her serious symptoms started in late August...