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Thread: Still struggling

  1. #1
    Join Date
    Aug 2013
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    291

    Wink Ongoing symptoms

    Hi all

    I am still struggling. I have been on the ALS train for a while now and had a normal emg last week of my legs and arms. My left foot and leg has been giving me issues.

    Most of my other symptoms have gone away of which there were many.

    But what has remained is that I am still constantly biting the right hand side of my tongue at night. It seems to drift to the right side when I am relaxed making me think that the muscle on that side must be weak and it's being pushed over by the stronger side. It then sore and rubs against my teeth when I am talking. I sound like certain words are slurring, particularly when I am saying them in a sentence.

    I have had my tongue checked by a neurologist twice and he has said it is normal. Yet I am still dealing with these symptoms. The emg doesn't pick up bulbar unless done in the region. I don't know where to go from here. I have tried ignoring it and I have felt less anxious and yet it persists.

    What do you think??

  2. #2

    Re: Ongoing symptoms

    I think you're absolutely fine. The medical tests prove it.

    I also think you have an anxiety disorder that has triggered physical symptoms that you wrongly link to ALS, and I think you focus on certain regions and end up feeling things that aren't really even happening. Because of the effect this has on your nervous system and your mind, I think you experience these symptoms even when your anxiety is lower. I also think you kid yourself that you're feeling less anxious in order to supply "evidence" that it really could be ALS.

    Basically, I think you're physically fine, but in urgent need of help with your anxiety.
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  3. #3
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    Aug 2013
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    24,667

    Re: Ongoing symptoms

    Your tongue does that only because you're relaxed/asleep. It has nothing at all to do with any weakness. You're biting it because you most likely clench your teeth while you sleep. You've been cleared medically so there's no valid logical reason to hold onto this irrational fear.

    That's what I think

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  4. #4
    Join Date
    Dec 2016
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    293

    Re: Ongoing symptoms

    youve had highly trained professionals and test results tell you its nothing. As sympathetic to your plight as I am, I dont think there is anything i can tell you that will be any help at all.

  5. #5
    Join Date
    Aug 2013
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    291

    Re: Ongoing symptoms

    I do appreciate all that everyone had said. It's just so hard not to worry. Even whilst I'm speaking to my fitness earlier I felt as though I was slurring with lots of saliva. And now my tongue is sore from rubbing against my teeth whilst talking.

    I just feel so paranoid about everything I feel just now.

    I have the psychologist again on Monday.

    ---------- Post added at 15:36 ---------- Previous post was at 15:30 ----------

    I do appreciate all that everyone had said. It's just so hard not to worry. Even whilst I'm speaking to my fitness earlier I felt as though I was slurring with lots of saliva. And now my tongue is sore from rubbing against my teeth whilst talking.

    I just feel so paranoid about everything I feel just now.

    I have the psychologist again on Monday.

  6. #6

    Re: Ongoing symptoms

    I'm in the middle of an ALS fear too and I can't wait to get my EMG in 12 days now. I've been clearled physically by my neuro but he still wanted to put my mind at ease with it. The thing with it is, you either have limb onset or bulbar onset not both. So like I've had body wide twitching for over a month now, random feelings of weakness and muscle aches and stiffness mostly in my legs but also somewhat in my hands just to name a few. With all of my symptoms I'm having I know there's no way in hell that if I have als that it won't show up on my emg. But that's also just it. If my emg is clean then I'll stop worrying about it, I won't move on to bulbar because if I had bulbar all of my symptoms would be related to that and I wouldn't have any of my other symptoms in my limbs. Same goes for you. Clean emg with a clear neuro exam = no als or mnd of any kind. I wish I was in your shoes right now I'd probably cry tears of joy. Stop worrying about it. Its one onset or the other not both.

  7. #7
    Join Date
    Mar 2016
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    699

    Re: Ongoing symptoms

    I think you need aggressive phobia therapy. If you're not doing CBT with in vivo exposure therapy, you need to start ASAP.

  8. #8
    Join Date
    Sep 2016
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    56

    Re: Ongoing symptoms

    Another way of potentially looking at this is that ALS is incurable regardless of what stage you are diagnosed at. Meaning that if you have this (which you don't, and have had tests from experts to confirm this) there would be nothing you could do. This disease is not like many cancers, where the sooner it's diagnosed the better the chances are of it being cured. What I'm getting at is, why are you so desperate for a diagnosis of this disease when there would be nothing you could do for it? What difference would having this diagnosis make? It's not as though you would get any treatment as such, other than palliative care. Live your life for today (and today you do not have ALS).

  9. #9
    Join Date
    Jan 2017
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    128

    Re: Ongoing symptoms

    Als is an incredibly common fear among hypochondriacs, you're not alone. But it's not a vague disease. I can understand how hypos can worry about ms, certain types of cancer, etc but it blows my mind that people fixate on als because in general, it's an obvious disease. And trust me, I've struggled with the fear as well.

    I'll let you know right off the bat that a neuro can smell that disease from a mile away most of the time. If it's not blantantly obvious when they first meet their patient, then it becomes obvious during the neurological exam. If something comes up abnormal, then and only then do they follow up with an MRI/emg/etc.

    As unfortunate as it is, the emg will not give you relief. You'll doubt the results just like you doubt the doctor, and you'll continue to google and read horror stories and try to convince yourself you won't die from als but the reassurance you're seeking will only make you feel worse and worse.

    It's as simple as this: failure not feeling. Many of us who have gone through this particular fear have sunk so far into the rabbit hole that the only saving grace was a cocktail of medication to cool our nervous systems down and slow our brains so we can rationalize again.

    Until you have buried this fear in the ground for good, you will continue to relate any and all benign symptoms (twitching, cramping, soreness, pain, stiffness, joints cracking, shortness of breath, tripping up on your words, perceived weakness, fatigue, etc) to the "inevitable" disease that you do not have.

    ---------- Post added at 17:49 ---------- Previous post was at 17:46 ----------

    Quote Originally Posted by Katy_o View Post
    Another way of potentially looking at this is that ALS is incurable regardless of what stage you are diagnosed at. Meaning that if you have this (which you don't, and have had tests from experts to confirm this) there would be nothing you could do. This disease is not like many cancers, where the sooner it's diagnosed the better the chances are of it being cured. What I'm getting at is, why are you so desperate for a diagnosis of this disease when there would be nothing you could do for it? What difference would having this diagnosis make? It's not as though you would get any treatment as such, other than palliative care. Live your life for today (and today you do not have ALS).
    This is the conclusion all hypochondriacs eventually have to come to, especially those fearing terminal diseases. Brilliant post.
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  10. #10
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    Mar 2016
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    493

    Re: Ongoing symptoms

    I am so what on the same fear. But I also fear MS more. I have heard and read ALS only causes twitches after the muscles has died. Which would mean that muscle would not respond or work. Then it would start twitching there. I have also heard ALS starts in certain area of body the progresses. Which would make my twitching and probably everyone else's in this forums not make sense to a ALS syptom. My twitching is all over. From legs to arms to hands to feet even sides and butt cheek area. And my twitching can move from one limb to next to arm to other arm in matter of seconds. Which I heard is not how ALS would cause twitching. Twitching suppose to be secondary symptom of ALS not a primary symptom. Meaning you would more then likely see that your muscle is much smaller then the other one on your other arm or leg or you would be noticing that the muscle is not working you have no control over it or what the muscle is suppose to move. Or both of the above.

    This is coming from a guy who gets twitches everyday all day. Have been for 11 months now. And funny thing is my twitches didn't start till 2 weeks after I ended up in ER with panic attack about my heart. Then I started noticing them.

    What I'm trying to say people with our stress and anxeity all worry over this for a reason because we all get the twitches and run to google. I did it and I'm sure plenty of others did it also. Now do we all have ALS? I'd put my life savings on it that we don't. It's a very rare disease. Ms is more common and even it is rare. But Our symptoms lean way more towards MS then ALS but why do we just assume we have ALS? Because we always assume the worst in everything we worry about on this forum.

    I had a colonscopy this past December and I had every symptom of colon cancer. I mean down to the T. And was worried to death. Guess what it came back clear with minor inflammation in rectum and minor hemmoroids. And GI Doctor said no polyps found and I won't need another for 10 years (which is the max time they give for colonscopy follow ups). What time trying to say is so many in this board go thru this scare and there is a reason for it because we all start twitching like crazy from our stress and anxeity causing our nerves to Randomly fire like a machine gun with unlimited ammo. If the test will make you feel better get them. What I have learned is every time I go thru this big work up of thinking I have something it affects my gf and family a lot also. And when I go get the all clear it makes me look bad to the and crazy. I hate thinking people think I'm crazy. I know what I feel but at same time we need to listen to people around us also. They are thinking straight like we use to think before we came down with anxiety.

    My family is to point they don't even want to hear it anymore. And I can't really blame them they have out up with me for a year doing this. And to be told by 3 different doctors over different things I'm fine.

    Listen to the people on the board I'm sure if they had any doubt you had ALS they would tell you to go get it checked out. But so many have been thru this and are still going thru it.

    ---------- Post added at 18:27 ---------- Previous post was at 18:14 ----------

    Quote Originally Posted by Katy_o View Post
    Another way of potentially looking at this is that ALS is incurable regardless of what stage you are diagnosed at. Meaning that if you have this (which you don't, and have had tests from experts to confirm this) there would be nothing you could do. This disease is not like many cancers, where the sooner it's diagnosed the better the chances are of it being cured. What I'm getting at is, why are you so desperate for a diagnosis of this disease when there would be nothing you could do for it? What difference would having this diagnosis make? It's not as though you would get any treatment as such, other than palliative care. Live your life for today (and today you do not have ALS).
    I also agree. Everyone on this board is so scared of what they might have but in the end there is not much we can really control. Maybe that is what scares so much of us in the first place. MS and ALS is not something any of us or doctors can change. It's not something the person did wrong to get it. It just happens. It's pretty much your body turning against you without a reason.

    But I do feel the symptoms we get as anxeity suffers lean towards MS not ALS when you read the actual symptoms. Anxeity can cause a lot of different things to go on with your body but it does not kill your muscles. It can cause muscle pain and soreness and fatigue tho.

    I'm not saying MS is good to have but compared to ALS it is. people with MS live full life's and only 1-3 of them become disabled. There was even a lady climbed Everest after having MS for years... If that's not saying something then idk what is.

    And to the original poster no I do not think you have ALS or MS was just stating the facts.

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