wanted

  1. E

    Lip tremors tired tongue

    To begin with, I have seen a neuro. I have diagnosed IIH (high intracranial pressure) and already had a follow up appointment where I mentioned these new symptoms. I am awaiting CPK levels. About 1 week ago my lip froze. I couldn't move it - it was just my upper lip and it drooped down and...
  2. D

    Family not helpful

    In another thread I explained that I didn’t think I’d be able to be enough support for my boyfriend who lives with his mom and sister. He and I have been together for 5 years but have been becoming a bit distant since my daughter died 7 months ago. I’ve been needing time to myself . But then...
  3. A

    Hello and need advice

    Just wanted to say Hello, I was diagnosed with ALS in December 2017. My symptoms started with right leg foot drop in October 2016. I use an AFO and walk with a cane. My left leg is showing signs of weakness and will be getting an AFO for my left leg as well, I think. Is it difficult to walk...
  4. F

    alert - shady ! !

    Here is a piece of Greek history regarding the Olympic games. 2500 years ago a slave call girl from Sardinia named Gedophamee (pronounced Get-offa'-me) was attending the first athletic festival in Greece. This festival had no name at that time. In those days the athletes performed naked and to...
  5. D

    Difficulty supporting a partner

    I’ve been with my partner for almost five years but we don’t live together and don’t plan too. Only a few months ago I experienced the sudden unexpected death, by fentynol, of my eighteen year old daughter. I’m still trying to cope with that. My partner has always been unable to be supportive...
  6. Nikki J

    Unwanted messages

    Please remember that you can use the report button if you receive unwanted visitor messages or private messages. It is helpful if you do so as the moderators can and will intervene if there is a pattern. Be aware that sometimes the person is messaging multiple members so it is helping others...
  7. N

    Family member positively reflecting on life and loss

    I hope this post is appropriate for this section, but I wanted to briefly share a personal reflection of my experience during my father's battle with ALS and what I hold dearest to my heart after losing him. The topic of ALS can be a sad discussion, it is sad. But, as odd as it sounds, after I...
  8. M

    A 10yr update and still undiagnosed

    Hello Everyone, I got some personal messages about my status and thought of sharing with you. I am still freaking out over ALS by the way, which is not healthy at all... I'm a 39 yr old man who has been experiencing ongoing neurological/muscle issues for the last 10 years. I will summarize...
  9. KimT

    Dental Issues

    After a very uncomfortable and painful dental appointment to replace a 40-year old crown today, I decided I need to write another ALS information sheet for dentists. The ALS Awareness Paper would probably not get read and it doesn't really address dentistry and ALS. When I went for a cleaning...
  10. H

    Need some help on weight gain and stomach collapsing when I lie down

    Hello everyone. So a bit of background for me. I had some issues swallowing for over a year. I had an EMG in Oct 2017 that indicated diffuse denervation. I thought it was multiple sclerosis at first, then Kennedy disease then oculopharyngeal muscular dystrophy due to wishing it wasn't ALS and...
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