1. lgelb

    Biogen picks up Ionis SOD1 treatment option

    This is important not just for advancing SOD1 tx, but establishing another case where a smaller firm (where a lot of ALS work is being done) has successfully handed off a therapy to a larger firm. This helps incentivize ALS research. ---- [Adapted from Seeking Alpha] Having seen positive...
  2. jethro

    Testing for ALS (?)

    friend of mine, older 10 years, diagnosed is with neuralgic amiotrophy (complete different diagnose, even has it almost the same symptoms). doesn't know what to do with money, so just called her doctor and not knowing what she asks, she asked: "please how can i test for that als...
  3. W

    Symptoms? FALS

    Let me start by saying I really hope you all tell me it's all in my head. I've read the sticky thread but I'm still unsure, so please bear with me while I ask for experienced opinions. A little background. A couple years before I was born (I'm 34 now), my paternal Grandmother and uncle (her...
  4. Nikki J

    Misfolded SOD1 is not a SALS issue after all Some of you may remember there was a SALS arm to the SOD1 gene blocking trial. This explains why and what they found
  5. A

    Upset Rant

    Hi All, I'm having a really down day and need some help... and probably hugs.. i don't know. Here's a bit about us: My husband had his first symptoms 5 years ago in his calf muscles. Since then it pretty much stayed where it started, calf muscles. His toes are slightly affected, his knees a...
  6. V

    Little info about pyrimethamine.

    Pyrimethamine significantly lowers cerebrospinal fluid Cu/Zn superoxide dismutase in amyotrophic lateral sclerosis patients with SOD1 mutations - Lange - 2017 - Annals of Neurology - Wiley Online Library
  7. A

    Parkinson's and FALS?

    Hello, I wanted to know about the value of getting genetic testing for my mother, who is 79 and in the final stages of ALS, and for me, a 40 year old father of 2. My maternal grandmother was diagnosed with Parkinson's in Asia at the age of 58. This was in the 1970's. she developed dementia...
  8. A

    Fals sod1

    Hi all, My husband & I are going through ivf to start a family. We just got the results of our embryo today & it's affected which means my husband 100% has a mutated SOD1 gene. What's confusing me is that no one in his family has it & no one in his extended family either! How is it possible for...
  9. B

    Is it possible to get a false positive diagnosis for ALS?

    Hello Everyone, This my first post since being diagnosed 2 months ago. I am having hard time accepting this. Sorry if I don't know all the proper etiquette for this forum. My doctors found almost all the symptoms in my first neuro exam and ordered mri on brain, upper and lower spine. these tests...
  10. L

    SOD1 I114T pathogenic variant

    Any one know anything about this variant?