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  1. S

    An intoduction myself

    Hi Everyone, my name is Juri. I have been living with ALS for 12 years now, and I had been gone from this site for about ten years, and during that period of time my FRS dropped from 23 to 1. I am on vent 24/7 (with the use of tracheotomy), I use an eye gaze computer for communication, and I...
  2. L

    Als fears

    Hello everyone. I'm new on here have alot of fears and anxiety about ALS. I have not been diagnosed. I've had four opinions from 4 different doctors that say I do not have that. I do have an EMG schedule in 3 weeks. I've been having a lot of pain in my legs feet arms. I would say minimal...
  3. W

    Questions on testing

    Thank you for taking the time to read what I have going on. I am a 44 years old mom of two adult children and a 10 year old. Last month, my boss called an ambulance and had me taken to the hospital because I was having problems talking, couldn’t swallow and couldn’t lift my leg and I panicked...
  4. P

    Upcoming EMG and Terrified

    Hi everyone. Thank you for welcoming me onto this site. I read the sticky, so I'll try my best to adhere to the statements there. I'm 27, female, and have been having concerning symptoms since mid-September 2018. Symptoms first started in my left hand and forearm. Started with twitching and...
  5. E

    Breathing regular checks

    Hey everyone! Today my father had a breathing exam and, as it has been the case since he is testes, the results were perfect. In the past two years and a half since first measured, there has been no observable decline as measured by any indication of respiratory function. Given these results...
  6. J

    My symptoms, my fears

    Hello, first of all thank you for letting me join this forum. I’ve been dealing with some symptoms in the last month and I wanted to ask your opinnion about it. I’m 40. For some time I had some numbness in my hands, legs and upper lip so I had an appointment with neuro to see if something...
  7. B

    Sorry but I have a update and a concern

    Hello I'm sorry to bother you I'm not sure if you remember me my husband thought he had Als but his emg only showed signs of myopathy. I have let the thought go but yesterday we went to Parkland for a clinical exam with a neuro and we suspected that after seeing the emg they would do a muscle...
  8. K

    Trilogy Settings with Progression

    My PALS has been using a Trilogy for the past year. His latest FVC was 26%, with MIP at 20 and MEP at 32. We can tell his weakening muscles continue to affect his breathing, just since Clinic in February. He had some issues with air hunger at night and increasing EPAP from 6 to 8 took care of...
  9. T

    Symptom Questions from 35/m

    Hello, I hope you are well or as well as possible. Thank you for checking this thread and thank you for making this section of the forum. It must be very difficult for some members. Your patience for those of us with questions is greatly appreciated. I've refrained from ALS symptom-checking on...
  10. J

    How are you?

    How I hate that question now. It's become almost a default greeting. I know most people are trying to be kind by asking, but I honestly don't know how to answer anymore. I usually just say "We're OK" or "We're hanging in there". But honestly, we're not OK. And I'm sometimes just hanging...
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