Scaring myself with als symptoms

Hey everyone, fist of all I'm not sure I'm writing this in the right place... I see "threads" where you can ask questions, but I couldn't find a "write thread" section so I'm guessing this is where I ask?

Ventilator Use Question

Ventilator Use
Question: when should I start using the ventilator during the day?
Data: Dec 2016 FVC 60%, and TLV 2.9 liters
Subjective: the past month I had to start napping on the ventilator, not just at night. The past week I gave up eating a bowl of puree for lunch and dinner and just have it through the MIC-key, it was exhausting to eat it all. My two naps during the day have gone from one hour to two or more hours, despite using the ventilator.

Twitching, emg, atrophy?

Hi everyone new here, however I've read posts for the last 7.5 months here and the bfs site. While I'm not looking for a doctor or expecting a diagnosis I am looking to share what I'm going thru at this point I'm back to square one. I have questions that I can't seem to find answers to do to maybe wording wrong in Google. So here goes.

Raising Money to End ALS in Springfield, MO

When it became apparent that more research and advocacy was needed to care for victims of Lou Gehrig’s disease, the ALS Association was founded in 1985. It is currently the only national non-profit organization fighting ALS on every front, including global research, providing assistance for people with ALS through their nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships.


I am a 23 year old male. Had surgery about 5 weeks ago and have been having very scary symptoms ever since. I have had weakness in left arm and fatigue in my legs. Calves get very sore when walking not even after that long. I also experience numbness and tingling in my left leg and frequently get fatigue pain in my arms. I have had some twitches and I cannot stop thinking this is ALS my vitamins are all good aside my D being a little low and I need to hear some feedback.


I have read a lot where they say it means nothing but that isn't true.  It is something. I have read many studies where people only present with fasciculations. Which means they do mean something. I would wait 6 months after fasciculations to get emg. I read from telemg website that two months is long enough to see neurogenic changes on emg but earlier may not show up. Also fasciculations are an abnormal occurrence in themselves.  After labs have been exhausted not explaining them it come down to ALS or BFS. Which is scary in itself.  So what are your chances.

Looking for recommendations NJ/NY area

Hello Everyone! After over a year, my Mom is finally diagnosed with ALS. I know I don't have to say here how the whole family feels like... But if anyone of you could recommend a clinic/center, I would really appreciate. This is the major decision at this point. We live in NJ. A neurologist is recommending Columbia Univ. in the city but i have doubts... I see that there is a clinic in N. Brunswick but would like to hear your input. Those of you who live in NJ/NY PLEASE, PLEASE  let me know about your experience. Thank you in advance!

Riluzole and increased fasciculations

Hello, I started Riluzole last Monday.  By Thursday, I could not lift my right leg or put my weight on it as I did a few days before. 

I also had an increase in fasciculations.  While I understand that it is unlikely from the medicine but I wondered if anyone else had this experience.   

I stopped the med on Thursday and feel a bit better.


My husband was diagnosed with ALS 2 years ago.  He can no longer stand and has lost most of his hands/arms function.  He can still talk and eat, which we are very thankful for.  He uses a Bi-Pap when lying in bed.  He has a Permobil power chair and we have a Hoyer lift, that I use to transfer him.  We use a full body sling with a commode cutout.  We have a hospital bed.   I am his primary caregiver.