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Hey everyone, I've been twitching for nine years. No weakness at all, and went to a neuro and was cleared back in 2008 after a few follow up appointments. However, since that time I had a fourth degree relative and my mom pass from what was thought to be ALS. My mother was 61 and my great-aunt...

Hello all, First I wanted to give you guys a little background on myself. I am 27 years old and recently lost my mother to what was first diagnosed as an autoimmune disease ( it appeared to respond to treatment ) but then her condition worsened greatly and she passed away. Five days before her...

Thanks for the comments all. We want to respect her wishes and we didn't specifically ask her about donating her brain to research. We may get enough blood for a DNA test so we can have genetic testing done at some point in the future. It just seems so fast. She went from breathing fine to...

Thanks for the responses. Mom went home to be with the Lord today about an hour after I wrote this.

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...

Did your husband have any sensation issues? My mom has "shocking" sensations in her leg and has had a headache before the motor symptoms started. It's not a normal tension headache though - she said it's sensitive to the touch and feels like lighting shocks. It sounds a lot like what's called...

We had an appointment with her local neurologist today, which I thought was very good. Unlike the doctor at the university hospital ( who spent maybe 10-15 min ) , her local neurologist spent nearly two hours with us talking about our options and examining her. While he did agree some of the...

Thanks. We will discuss that with him Tuesday. I also know that she was on the minimum .4 G / KG and I know a lot of people with MMN routinely get up to 5x that amount. I may ask if there is any way we can do another loading dose for her with a follow up a few days after the regimen so he can...

Have they linked any genetic anticipation to c9orf72 or SOD1? My family has one ALS case in 9 siblings from my grandfathers generation, and one suspected ALS case ( my mother ) out of 33 cousins from those 9 siblings. Most of the cousins are currently 55+ and my mom is 61. My great aunt who had...

She had an MRI of the spine but not of the brachial plexus. Originally they thought it may be cervical spondylosis but when the fascics in the lower body it ruled that out. She also has cervicogenic headaches. Antibodies didn't show anything but I've heard those can be variable I guess.