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

  1. #71
    Join Date
    Nov 2018
    Posts
    7,747

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

    I think you need to read the main post on this thread again.

    Oh, and quit Googling, it'll only make you more afraid and unhappy. I speak from experience here.

  2. #72

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

    Quote Originally Posted by BlueIris View Post
    I think you need to read the main post on this thread again.

    Oh, and quit Googling, it'll only make you more afraid and unhappy. I speak from experience here.
    Thanks, BlueIris. I did have another read of it on your advice. Until I feel totally normal again I don't think I will be able to fully stop worrying : ( I have started seeing someone about the anxiety and PTSD now, all of this has kind of made me get around to that finally.

    I'm trying to remind myself that there are a few plausible (not terrible) reasons for my recent health issues. And that most people could probably get scared about ALS if they looked up the symptoms. Oh I didn't mention that I've had a neurologist tell me not to worry about it, he wasn't concerned, this was during a visit to A&E in mid December, I was advised to go because of the widespread sensation loss etc. They thought I might have an emergency spinal situation (Cauda Equina Syndrome)

    Trying to use other examples too e.g. a few bad headaches doesn't equal a brain tumor in 99.5% of cases. Wow this is so hard. Am very open to advice and words of wisdom from others, if you have the time and emotional energy to help (I know how energy sucking anxiety can be, sometimes it leaves me physically exhausted.) The twitching and aching is pretty bad today, I'm going to go for a walk after lunch.

  3. #73

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

    Hi There
    Ive been going through this for about a month now, it started off i got a numbness down my left arm and of course i went to google and ALS came into mind because its a very big fear of mine, Within a week symptoms of tingling all over my body like EVERYWHERE along with numbness, left arm feels like its not there, I feel like i am shaking inside, sometimes it feels like Im floating when im walking like the sensation is gone in my legs, ive a constant lump in my throat and it feels like when i grab it it clicks, under my tongue feels like its swollen all the time and is kinda painful, im getting pains everywhere especially in my thumbs, hands, wrists, arms, back of my neck and shoulders and feels like my bones are creaking and wake up stiff. Ive been to the doctor 3 times all being cleared of stuff like ALS, MS, Vitamin defiecency and arthtitus. Like even when I was scrolling through here my thumb was going crazy on the mouse.I keep lifting things, clenching my fists really hard, jumping up and down really high, all just to see if I have strenght still, Im 23 and I just want to know is all this normal with this anxiety like can everything litterally just come upon me within a few days. I see that things wrote on this is a bit old so hopefully There is somebody that can help me ive never felt anxious really about anything and never seen myself ever being like this Ive stopped playing sport as like I actually cant see myself being able to so I really need to beat this quickly. Thanks

  4. #74

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

    Hi all, just joined this forum today after seeing this post. Been suffering from HA for the past 6-8 months and I've been through all different types of cancers, hypoglycemia, tumors, etc... (for reference, I am a 23 year old male)

    ALS seems to be the scariest disease to shake because it's so random. I get that it's incredibly rare but when you factor in the occurrence rate in different areas (my city, state, country, etc), it comes up with some scary numbers. Also doesn't help that I've indirectly known two people who have died from ALS, one who was a year older than me when he passed away.

    For now, my biggest fears to be in nerve pain and numbness, almost carpal tunnel like symptoms (which is probably much more probable as I type a lot for my work). Glad to have finally joined a community where everyone understands the struggle.

  5. #75
    Join Date
    Dec 2016
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    3,832

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

    MMmmmmmm....Burger King....

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  6. #76

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

    Quote Originally Posted by Josh1234 View Post
    If someone is able to lift 100 pounds at the gym for 20 years then suddenly one day, they can't lift 100 pounds, they can only lift 50, is that not failing? Yes, it is. He failed to do a task his body can easily do for years (lift 100 pounds). In ALS quick paralysis does happen, but also a more gradual loss, but make no mistake, it's not subtle. Losing 40 to 50% of your strength overnight is a big deal.

    When discussing diseases of the body, we go by what the overwhelming consensus says the pathology is. Fixating on an isolated case or two is what hypos do.
    Sorry, I know this post is old but wanted to reply because this just happened to me and I think it will help anyone else who might have similar questions - I went to work out, tried to lift what I usually lifted easily, failed miserably. Lowered the weight quite a bit, failed miserably again. Wound up getting out my usual number of reps, but only at about 50-60% of what I normally do. No pain, just suddenly, shockingly weak in my left arm. I freaked out a little - painless, sudden, drastic, localized muscle weakness in a limb. Scary stuff, right?

    So I went to an Orthopedist who specializes in upper extremities, decades of experience, offers EMGs as one of his provided services, and has his walls covered with autographed pictures of the professional athletes he has worked with (suffice to say, he knows his stuff). He checked me out. Diagnosis? No need for X-rays or MRIs due to lack of pain. No EMGs due to muscles working just fine during the exam. It's 90% likely to be a minor strain to muscles in my left shoulder, 10% possible viral infection. No working out my upper body for 4-6 weeks. Took him less than 15 minutes lol.

    What I learned from him:
    1. I didn't actually have clinical weakness - going through the strength tests, my muscles were firing fine, but when lifting at heavy weights I was perceiving my performance drop from a likely muscle strain elsewhere in the body as weakness. Struggling with weight is not the same thing as clinical weakness. Even if you're actually weaker in terms of lift strength or raw power, it's still perceived weakness until a doctor's looked you over and confirmed it to be clinical weakness.
    2. Actual issue appears to be to the muscles in my shoulder, which I was again perceiving as being an issue only in my tricep/upper arm, because of the type of lift I was trying to do

    I don't think the original post ever intended to say if you suddenly lose 50% of your strength that everything's fine and there's no need to see a doctor - I think the point is, that's not what's meant by failure/muscle weakness from ALS. The internet does an awful job of describing the actual presentation of the symptoms that get listed and read by folks with anxiety. And obviously by my own experience, we rarely even accurately interpret our own symptoms. Thought I was an obvious case of clinical weakness - wrong. Thought the weakness was a limb - wrong again. Bad interpretations by someone who isn't a doctor (i.e. me).

    All this to say, I can confirm the original post ties with my own limited experience Hope this is helpful to someone out there!

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