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  1. Mocha1
    09-26-2017 04:31 PM - permalink
    Hi There, saw your post the other day and thought I would chime in and say I'm sorry for what you have been experiencing. How very frustrating to have no answers after four years. I was finding the forum useful for a time, however there is something about it that also rubs me the wrong way. I compulsively come back as I have not gotten a handle on my anxiety in 19 months of twitching and other symptoms. I have not pursued much due to my anxiety problem and the stories of folks like yourself. I'm hoping you can get an answer some day and it's something you can treat! Best regards.
  2. monster
    09-25-2017 06:12 AM - permalink
    I'm sorry you are not getting answers, but I'm glad it's not ALS. Wow!! 30 lunges, lucky you :-)
    Maybe the pain was from building that muscle. I started noticing all my muscles getting flabby over time. I can't build muscles, haven't in a very long time now. I use to have so much definition.
    Do you have a neurologist checking you every 6 months? Hang in there. What do the doctors tell you?
  3. DaChief
    07-18-2017 04:20 PM - permalink
    I was living in Tennessee at the time. I ended up going to the Mayo Clinic in Jacksonville and that is where the diagnosis was made. They have a lot of experience with ALS patients.
  4. monster
    07-12-2017 06:10 AM - permalink
    My weakness is literally all over but at different degrees! My breathing test last month is in the 80 range......was 90-100.. I can't build muscles at all. My limbs continue to get skinnier and flabby. I always worked out and in shape, now I can't even blow dry my hair without stopping and resting a few times. My 2017 emg was clean. 2011 & 2012 emg found fasciculations only. Good luck Monday.
  5. monster
    06-29-2017 12:58 PM - permalink
    I also think/thought the doctors are waiting for more progression..I often wonder why they think nothing is wrong with me!?!? ..our symptoms sounds the same in a lot of ways but I have weakness that keeps progressing. We just have to wait and see. Keep me posted. Good luck to you!
  6. monster
    06-21-2017 09:31 AM - permalink
    being in limbo sucks but it's better then an MND diagnosis. Hang in there
  7. Atsugi
    11-07-2016 01:13 AM - permalink
    ♥ Atsugi
    Hi again, Stephen. Sorry to see you have so many issues. How old are you?
    I get the impression you've been focusing on neurology a lot. But a lot of your issues don't have anything to do with neurology. So now it's back to the family doctor. A GP medical doctor such as an internal medicine (internist) would be your best bet.

    There is something else, too. Medical science is young. Doctors mainly diagnose people by listening to the answer "So, what's wrong today?" What a shitty way to do science. But it's all we've got up to now.

    The fact is, some things just never get fixed. You have to live with them. Forever. It sucks, but that's the way it is.

    Now go see your family doctor.
  8. Jamieh
    03-24-2016 07:08 AM - permalink
    How are you? Any update recently?
  9. Jaxx1
    01-28-2016 08:45 PM - permalink
    I completely understand how you feel I don't think anxiety has anything to do with the symptoms we have I to have the shortness of breath fatigue twitching all over and the neck pain with no diagnosis I hope you get answers soon
  10. Atsugi
    01-27-2016 10:05 PM - permalink
    ♥ Atsugi
    Hi Stephen. I'm sorry if I've offended you.

    I want to make sure that people like yourself are given proper advice to get proper care. Although we have experience with ALS, we're not doctors and really don't have the time to explore other, non-ALS issues. So my advice to people who don't have ALS is pretty limited.

    After reading all you've written since 2013, my first thought was, Why isn't this guy dead? OR at least in a wheelchair? Most people with ALS don't last that long.

    Stephen, I would like to see you get better and live a happy life. It's my thought--and this is not an insult--is that a visit to a psychiatrist would be a good first step. I also think every minute you chase ALS is a minute you're wasting, not getting an answer to your anxiety, or whatever the problem is.

    It's also a minute [I]we're[/I] wasting.

    So please accept my apologies for being rude. And good luck getting the treatment you need.

About Me

  • About help1127
    What's your relationship with ALS/MND?
    If diagnosed, when was the diagnosis?
    State or Province
    Diagnosed with an unknown neurological disorder for now
    Electrical Contrctor
    Boating, Fishing, BBQ with good friends and family.


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