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Hello there, I’m Karen, I’m 53. My problems started a while ago and I have been so confused, upset and angry with doctors since this has all began. I really don’t think I have MND, or maybe I’m in denial but it just doesn’t add up to me. I would really like your opinions and guidance, it would...

i tried to contact elysium directly, by now no answer... does anybody have info what is going on with it? copied: The Orphan Drug Designation submission included data from a 2017 double-blind placebo-controlled European pilot study in humans. To expand on the results of the pilot study...

Although we had a probable diagnosis a few weeks ago we were waiting to get into our ALS clinic for an official diagnosis from them. It still came as a big blow for my father and our family even though we were expecting it. My question is his ALS functional scale rating was 46. Is that...

My dad recently passed after a 2 year battle with ALS. I was his only relative, so by default became a caretaker. I spent hundreds of hours on VA benefits and my Dad's wish was for me to help others. I found PVA and DAV in my area to be of very limited help. They basically got me started and...

Before I ask my question I will give a little background info on my situation. I was injured in the military and have two discs pushing on nerves which causes extreme pain down to left foot. The VA wants to do disc replacement surgery but I have been holding off as long as possible. I was...

Hi, I apologize for starting a new thread. I had a thread in February but it has been closed. My old thread was “flaccid in a week”. Sounds ridiculous but my muscle do go soft very rapidly. I have been to 3 nuero and a rheumatologist since my last thread. They all agree something is going on...

Thank you so much tracyliz, Your detail is very much appreciated. As someone who is just at the start of this journey I'm just trying to get a handle on what the future will look like. I know my progression is still in its infancy and I'm yet to be definitively diagnosed. I've had 2 CTs, 2...

Hello, This is my first time posting and I've only been poking around for a week as it was a week ago that my Neurologist said he thinks I may have PLS. I've only had my symptoms for a year and I know that it can take many more for a definitive diagnosis. With that being said, I'm wondering what...

I'm new here and just got the devastating news that my dad may have pls. He had brain and cervical spine mris, nerve conduction test, and emg. Neurologist is guessing pls as nothing else makes sense. He's referring my dad to another neurologist at uc irvine, dr. Mozzafar who has the equipment to...

a neck support that looks like it will work! it was developed and tested under the name sheffield snood, and it is being marketed under the name headup collar. here is some info on it...