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  • 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.
    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?
    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.
    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.
    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!
    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.
    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
    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 we're wasting.

    So please accept my apologies for being rude. And good luck getting the treatment you need.
    It appears, help1127, that you don't have ALS or any MND, and if I recall correctly, that has been verified many times by professionals who examined you. yes?

    We must focus our time to benefit people with ALS, and not spend time with people who don't have ALS. So it seems to me that it's more appropriate for you to ask your questions on some other website.
    you should not post on other peoples threads are you do not have ALS. I know you want to help but you need to stay away from this site altogether
    Hello all,

    Just wanted to update on my current situation. So far I have had 4 clean emgs last one done 4 weeks ago. The only thing my nero noticed was that my knee reflexes are brisk but he said that could be because of my anxiety.

    Currently im feeling weakness on my left arm and twitching continues. Just wondering if this could be the start of UMN. Any advice would help
    Hello! I am so glad that you're feeling better. I am also a Florida resident and I would absolutely, positively participate in an ALS Awareness Walk. I can help you plan and organize, so please do not hesitate to reach out in my direction. Thank you very much for the inspiration, and God bless you and your family during this holiday season.
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