scared

  1. M

    I’m scared as I wait

    I’m a carrier of C9or72. I’m 42 f and have been asymptomatic for years, but live with major anxiety over ALS. In the last couple years I would say my anxiety has lessened, but any time something goes awry with my body I automatically worry about ALS. For a little while now, I’ve had muscle...
  2. M

    I’m struggling and scared.

    Hi there, Please bear with me - this may be a longer post and I am awake at night and very scared. I’m a 41 y/o mom of 2 young children, carrier of c9orf72 and have been experiencing some symptoms. My family has been devastated by this disease; we’ve lost so many people, though none in my...
  3. Kfitz

    Scared pt. 3

    Both of my threads have been locked (found here and here), so here’s my third. I finally saw Columbia, since they never called for a cancellation and every time I called there was none. Out of all the doctors I’ve seen they’ve been the most disorganized and disappointing. Initially, when I made...
  4. Kfitz

    Scared pt. 2

    It’s been a while since posting, but my symptoms have progressed a bit. My thread isn’t allowing me to post my update, so I am creating a new one. I went to a new neuromuscular Dr. named Philip Ragone with Northwell. He said based on my clinical exam I have features of upper motor neuron...
  5. J

    Multiple symptoms for months

    Well for starters I found this website in a state of my panic and have read others threads about similar symptoms in a search for reassurance. I have been very apprehensive about posting here because I know a lot of people are probably just overexcited or scared and have convinced themselves...
  6. S

    Proof that widespread twitching is related to ALS

    I recently came across this article and I'm freaking out now: https://www.ncbi.nlm.nih.gov/pubmed/11464925 Everything I've read on here says that widespread twitching is not indicative of ALS, but this article states otherwise. The worst part is that I had an emg last year that the neuro...
  7. J

    Lift Chair Question

    For those of you with Golden lift recliners, can I get my PALS into it with a hoyer? I have been exclusively using a hoyer to transfer him for a while now. I'm pretty sure he could not stand on his own even with support, even just for a pivot transfer. (I'd be scared to death to even try.)...
  8. D

    Frontolobe dimentia.

    heredity question Hello everyone. My first post. I'm Deb from Australia. scared to say much right now. I'm actually waiting for a diagnosis and "incidentally discovered my grandmother died of pneumonia secondary to ALS in 1970. I read in Google scholar that not all people with the faulty gene...
  9. C

    Please Help with symptoms

    Hey everyone, I’ve been doing lots of research and not getting good information from my doctors - and it’s gotten to a point where I’m getting extremely anxious/scared and just need help and opinions from others. So I suffer from muscle atrophy and weakness in my left side (notably my left...
  10. Ande

    Frightened that I have ALS

    I know I'm 17 years old and it's very rare for me to have ALS on this age, but I still hope you hear me out on this. This all started with muscle twitching about 4 weeks ago. I felt it in my legs and in my back which was really weird feeling. I also noticed that when I was standing still my...
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