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  1. #11
    Join Date
    Dec 2016
    Posts
    213

    Re: ALS and why you DON'T have it!

    Quote Originally Posted by Fishmanpa View Post
    I took it off the ALS support forum. It's sad to see all the posts from anxiety sufferers. The admins and members are incredibly kind and brave but they definitely know an anxiety sufferer when they see one and ban posters frequently. Many return under different names and are repeatedly banned. It's very sad to say that some of those posters are members here :(

    I saw the same thing on the cancer forums I was part of and that's how I ended up coming here. Stuck around to try and help. It strikes a nerve with me just due to the level of disrespect shown after repeated reassurance and kindness and shows just how selfish HA can be. You're right Sixpack, anxiety lies on many levels.

    Positive thoughts

    Yes I knew you had gotten this from an ALS forum. It is pretty darned sad that an ALS forum has so many people erroneously believing they have it coming there, that there is such a STICKY posted on the site. It should be a GIANT wake up call to those going on the forum seeking reassurance about a disease they do not have. Sad thing is--as good as the thread is--it will not dissuade most of those folks from the ALS fantasy

  2. #12
    Join Date
    Aug 2013
    Posts
    20,784

    Re: ALS and why you DON'T have it!

    Bump
    __________________
    "Eat. Drink. Enjoy the work you do. Be thankful for the blessings God gives you in this life. Live, love and seek out the things that bring your heart joy. The rest is meaningless... Like chasing the wind." King Solomon

    The best help is the help you give yourself! http://cbt4panic.org/

  3. #13
    Join Date
    Feb 2017
    Posts
    160

    Re: ALS and why you DON'T have it!

    furthermore, wondering if you might just have bulbar after getting your arms/legs cleared is PART OF THE NEUROSIS!

    You're thinking that it's this terrible possibility no one else ever came up with, when you're just reaching a new level of the stupid rabbit hole.

  4. #14
    Join Date
    Feb 2017
    Posts
    90

    Re: ALS and why you DON'T have it!

    This is a great post. Very helpful.


    The only part of it that makes me anxious is the hyperreflexia. I've not had a reflex check since my physical last year. I tested the my own and they seemed brisk. Granted I'm not a doctor or medical professional


    If I don't have weakness with my twitches should I worry about reflexes and make an appointment or just let it be?


    Thanks

  5. #15
    Join Date
    Jan 2015
    Posts
    276

    Re: ALS and why you DON'T have it!

    Anxiety can cause brisk reflexes. Hyperreflexia in ALS is very noticeable . You'll have one leg shoot up like a jack in the box. Seeking reassurance is unhealthy when it comes to anxiety, but sometimes it does help. I would say no, but sometimes not doing it puts an individual in a manic state. Twitching isn't not ALS, so I would just let it be.

  6. #16
    Join Date
    Apr 2011
    Posts
    4,754

    Re: ALS and why you DON'T have it!

    Bump

  7. #17

    Re: ALS and why you DON'T have it!

    I'm not proud to say but I've posted on the als forums, The feelings of shame and guilt definitely manifest and to be honest perpetuate my health anxiety. I've got a few more symptoms than just twitches and while my PCP is not remotely concerned about MND/ALS he had still referred me to a neurologist due to my concerns. This appointment is in a few days at a world renowned MND clinic and I'm hoping that the neuro will give me some positive news. My PCP is amazing and has been a great support through this whole ordeal.

    The likelyhood of a 31 year old with no family history having this terrible disease in quite remote however when your on prescribed meds like Valium and mirtazapine and suffering with severe health anxiety which has only properly manifested in the last 3 months it can really knock your body around.

    There are some very helpful people on that site and I agree that if your only symptoms are twitching then do not waste their time and keep well away from that site, it will only make your more than likely somatic symptoms worse. If you've have a clean EMG and the all clear from the neurologist then stop wasting their time and move on with your life or try to find the true cause of your symptoms.

    This might help some people as a coping mechanism. I have a calendar at home on my wall, every day I add a sticker to each passing day to signify time passed without a FAIL not a perceived weakness or fatigue a FAILURE. Remember it's not a sensory disease it's an inability to do something no matter how hard your try.

    Also Bulbar onset stats are skewed to the older onset and also older females.

    Actual stats on als according to the CDC for 18-39 is 0.6/100,000 or 6 per million, I believe this age bracket is overly represented by vets and familial MND/ALS

  8. #18
    Join Date
    Aug 2013
    Posts
    20,784

    Re: ALS and why you DON'T have it!

    BUMP....

    Just due to all the twitchy, ALSy, MSy posts....



    Positive thoughts
    __________________
    "Eat. Drink. Enjoy the work you do. Be thankful for the blessings God gives you in this life. Live, love and seek out the things that bring your heart joy. The rest is meaningless... Like chasing the wind." King Solomon

    The best help is the help you give yourself! http://cbt4panic.org/

  9. #19
    Join Date
    Mar 2017
    Posts
    202

    Re: ALS and why you DON'T have it!

    I am literally in the waiting room to see a GP over burning pins and needless in my arms, aching legs and twiches and I must say this post has just helped me a lot

  10. #20

    Re: ALS and why you DON'T have it!

    Fishmanpa:

    Would you mind sharing how you came about the facts/knowledge in the original post? It's comforting information for me, but I'd like to know how credible threat info is. Thanks!

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