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Thread: Update On My Situation - Just Had EMG

  1. #111
    Join Date
    Dec 2016
    Posts
    867

    Re: Update On My Situation - Just Had EMG

    I'm trying to think through this... here are some notes I wrote to myself...

    _Was the burning legs on September 6th, 2019 my first sign of ALS? If so, why was EMG of legs normal even when they EMG’d my most symptomatic leg and after I had had symptoms for two months? If my legs were already being affected by ALS, why are they not weak still today after four months? I could definitely go outside and run a mile right now._

    _If that was not the first sign of ALS then I must conclude the finger twitching is, leading me to the conclusion that the legs burning set me on a fear of ALS, which I didn’t have at the time, but then just months later I really did develop ALS which manifested in my fingers?_

    _*If I answer that the legs were part of the ALS, I am left with no answer for why they are not weak, which is the hallmark of ALS. If I answer that they were not part of the ALS, I am left to conclude that I coincidentally really did develop ALS just months after I began fearing it, which seems absurd.*_

  2. #112
    Join Date
    Apr 2003
    Location
    , , United Kingdom.
    Posts
    43,730

    Re: Update On My Situation - Just Had EMG

    If you changed your attitude people would be more sympathetic to you.

    Don't state you have cancer or MND/ALS and it can't be anything else possible ever ever ever.

    That is what winds people up as you have not even considered other things.

    Be a bit more thankful as well. You ignore most people on here and ALL advice.

    If you can't make these changes then we will be closing your threads again.
    __________________
    Nicola

    “Don't be afraid of death; be afraid of an unlived life. You don't have to live forever, you just have to live.” - Natalie Babbitt

    Please help keep NMP running and donate to the running costs: http://www.nomorepanic.co.uk/donate




  3. #113
    Join Date
    Dec 2016
    Posts
    867

    Now Having Bulbar Symptoms

    So I started fearing ALS 6.5 months ago. Started with sore legs and hands. That is mainly gone. In December I had twitching fingers which has also subsided quite a bit. I'm not having any major muscular problems at the moment.

    Until 3 days ago. I had not gotten much sleep and I felt very out of it. I noticed my tongue felt "awkward" and like it was harder for me to speak, although I wasn't really slurring any words or anything. I started hyper focusing on it - saying sentences out loud, etc. Yesterday I had more of the same thing. Even a tingling / tickling feeling on the tip of my tongue like maybe some very small twitching? Also have felt that in the back of my throat.

    Today it continues. I tried to record a video of myself talking and actually did mess up a few words and had to restart and try again. I'm SO depressed. I thought I was about to get over this and now here I am with bulbar symptoms. I'm 33 years old.

    I JUST saw a neurologist last Monday (9 days ago) who just did a clinical exam with some strength tests that were all fine. He also checked all my reflexes which were fine. At the time I wasn't fearing any of these bulbar symptoms or feeling like I was having more trouble speaking so I didn't bring it up. Now my next follow up is in six months.

    I mentioned it to my wife and she says I sound normal but I know something is different in my mouth. It's like my tongue isn't working quite as fluidly as it did before.

  4. #114
    Join Date
    Apr 2003
    Location
    , , United Kingdom.
    Posts
    43,730

    Re: Now Having Bulbar Symptoms

    Please don't go back there darkside - you do not have it at all.
    __________________
    Nicola

    “Don't be afraid of death; be afraid of an unlived life. You don't have to live forever, you just have to live.” - Natalie Babbitt

    Please help keep NMP running and donate to the running costs: http://www.nomorepanic.co.uk/donate




  5. #115
    Join Date
    Dec 2016
    Posts
    867

    Re: Now Having Bulbar Symptoms

    I know. I really don't want to. It's so crazy. I'm not having any significant muscular problems right now. No soreness. No stiffness. No fatigue. Nothing. Good grip strength. So, like am I to make of this? Were my muscular symptoms actually ALS but now they feel a bit better but now it's progressed to Bulbar? That doesn't seem to make much sense. Were my muscular symptoms totally unrelated but now I JUST HAPPENED to get Bulbar ALS coincidentally. That also sounds pretty crazy.

    I was just *so* tired on Monday I think from all the COVID-19 stress going around and not sleeping well that even my brain was just not firing on all cylinders. Wasn't thinking super clearly. I don't know if that was contributing to my speech but once I felt like I was having trouble I started hyper focusing and now I can hardly say any sentence at all without like mentally analyzing every word as I go, which of course makes it even harder to speak since I'm trying to speak and analyze my speech at the same time.

  6. #116
    Join Date
    Nov 2018
    Posts
    4,109

    Re: Now Having Bulbar Symptoms

    Darkside, you're just half-crazy from stress like the rest of us. Don't sweat it.
    __________________
    ************************************************** ********
    Sometimes, it's better to light a flamethrower than curse the darkness. - Terry Pratchett

  7. #117
    Join Date
    Apr 2011
    Posts
    4,697

    Re: Update On My Situation - Just Had EMG

    Hi

    This is just a courtesy reply to let you know that your thread was merged with another of your threads.

    Please when posting on similar topics add it onto your previous post rather than starting a new one.


    It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

    Elen
    __________________
    Please help keep NMP running and donate to the running costs: http://www.nomorepanic.co.uk/donate

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