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  1. L

    Question about Bulbar

    I really didn't want to post on here because I know those confirmed with this horrific disease have alot more on their plate. But I also recognize it is a great resource with alot of Knowledgeable people. A little about me, 42/m very active and big into fitness and bodybuilding most my life...
  2. P

    One week since diagnosis...

    My girlfriend was told that her symptoms are consistent with ALS a week ago at Mass General Hospital. As I stated in previous posts I have known for a while...and her dirty EMG sent us to Boston for the second opinion/confirmation. The first few days were spent crying/ holding her. She now...
  3. T

    Just about ready to give up;

    Hey everyone. I've never posted on a forum before such as this one, although I've long been someone that often browses to see what others are going through and that people have to say. But I'm genuinely at my wits end and don't know how to cope any longer, so perhaps just discussing my issue a...
  4. B

    Concerned about ALS

    (Sorry i first posted it by error in the general feed) Hello everyone, first of all thank you for everyone contributing to this forum because I find it quite helpful to read about individual experiences. I am writing here as I have been experiencing different health problems for a while...
  5. J

    Bodywide Fasciculations, cramps for past 8 months

    Happy to say no weakness other than rubbery legs but I’ve read that some ALS presents as sudden widespread fasics. Needless to say this is freaking me out. I’ve also read that ALS fascics are very frequent. Mine are nonstop and occur every few seconds. Every day is a new symptom. I have...
  6. T

    Getting Help, Caregivers

    We have a mix of ways that we have help. I thought I'd share them. I'd also be interested in hearing your ideas. For reference, my Dad is mostly immobile now, (diagnosed the end of 2018.) All transfers are with a Hoyer lift. He does get transferred to a commode or his PWC, (mostly if we're...
  7. J

    Here is what teenage ALS girls has in common:

    link contains unsuitable sublinks etc, so use your search engine, i wont paste it. just google: EXCLUSIVE - The 7 mothers who lost their teenage daughters to ALS 5 months old
  8. I

    Minor bleeding at tube site. Normal?

    I had my feeding tube put in in April of last year. My ALS is bulbar and I no longer can take anything by mouth. Several weeks ago I noticed that there was blood at the opening. It is not a lot, but there appears to be a little blister or skin tab protruding from the opening. I am now...
  9. M

    A delayed introduction

    Hello All, I want to first say thank you for taking the time to read this post. I have avoided posting here for about 1 year but due to changes recently I have decided, still with some hesitation, to post. I was going to write more of my history but I do not want to take up your time any more...
  10. S

    No diagnosis - Nervous after 6 months

    I’m concerned about my symptoms I’ve been facing them for just under 6 months. Let me start out by saying that my life is very stressful. I manage about 500 people all over the world. The ups and downs of corporate politics are very impactful and my stress level in the last 6 months has been...
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