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Thread: ALS/MS scare- terrified!

  1. #1
    Join Date
    May 2015
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    133

    ALS/MS scare- terrified!

    Hi all,

    So I have been dealing with muscle twitching for almost a year now. It started in my nose, moved to my eye, and now to my legs and stomach at rest. I broke down and went to the doctor today, and he sent me for a big blood work up for autoimmune and neurological disorders. My right leg has been feeling weak as well.

    I wasnít concerned about ALS until I just read an article that a man was diagnosed after only having twitches all over his body. No other symptoms until the disease eventually progressed. This has me TERRIFIED. From what I thought, ALS had many other symptoms, even at the beginning of the disease. Based on this manís experience, that is not true.

    I am so scared now. Please help.

  2. #2
    Join Date
    May 2014
    Posts
    342

    Re: ALS/MS scare- terrified!

    Do you have any other symptoms? Did you push your doc for a blood test? Iím surprised your doc actually gave you a requisition for blood work as most know twitching, especially generalized twitching is a tell-tale sign of anxiety.

    I had the leg weakness too. Twice! Both during brain tumour scares. And trust me it actually felt like my right leg had to be ďorderedĒ to move. It was so weird.

    Donít be scared. You will be okay Itís not ALS

  3. #3
    Join Date
    May 2015
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    133

    Re: ALS/MS scare- terrified!

    Thank you for your reply. Yes, I had blood work and he said he will most likely send me to a neurologist or rheumatologist next, depending on the results. He did a bunch of small in-office Neuro tests for strength and reflexes, and said it was ok, but obviously there are more tests that can be done. I am concerned because the twitches started long before the anxiety did.

  4. #4
    Join Date
    May 2015
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    133

    Re: ALS/MS scare- terrified!

    Also, I forgot to mention, I can basically self-induce the twitches in my face. If I close my eyes tight, it goes crazy, then stops.
    Sorry, Iím just super worried...

  5. #5
    Join Date
    May 2014
    Posts
    342

    Re: ALS/MS scare- terrified!

    Donít be sorry. It sounds like your doc is just giving in to your fears and ordering unnecessary tests. Most good docs wonít give in to these things. My doc refuses any kind of unnecessary tests and absolutely recognizes that I have health anxiety. Instead she chooses to talk to me and reasons with me. I donít know what yours is like. But from what Iím reading he is very okay with causing you undue anxiety and sending you for testing. Especially with an issue that you have admitted you can control yourself.

  6. #6
    Join Date
    May 2015
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    133

    Re: ALS/MS scare- terrified!

    Honestly, I very much downplayed the severity of the twitches because I know he can overreact. They did start before I had any anxiety (I think they have created it). They eye is the only one I can force to happen. The rest are random and constant. I requested bloodwork first and he very much jumped to neurologists following. He tends to be the kind of doctor to test like crazy, but he did seem somewhat concerned that Iíve been twitching for so long and nothing has stopped it. I had avoided going to the dr because I didnít want to find out what it was..

    Thank you for your help. Itís just nice talking to someone.

  7. #7
    Join Date
    May 2015
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    133

    Re: ALS/MS scare- terrified!

    Well my blood work came back great, inflammation (CRP and CK) and magnesium are fine. He said he still wants to send me to a neurologist, possibly. Does this sound like BFS? I have to say I am relieved in a way, but still wondering what it could be.

  8. #8
    Join Date
    May 2015
    Posts
    133

    Unhappy ALS Rabbit CAVERN

    Forgive my multiple posts on this- I didn't get many responses to my last one, so trying again. I'm kind of freaking out here.
    Before you ask, yes, I have made an appointment to get help with my HA relapse... I just need to talk it out first.

    So I have been twitching basically since January...started with my nose, then eye, and then widespread all over my body. It literally hasn't let up since. I finally broke down and saw my doctor, who ran blood work: Inflammation, Thyroid, Magnesium, etc. Everything came back fine.
    While I was at the appointment, he did a bunch of in-office neuro tests- strength, smiling, reflexes, etc. He said they seemed fine. BUT... he said no matter what the outcome of the blood work, he would send me to a neurologist because he thinks something is causing the twitches.
    Now before you say something again, these twitches started well before this new bout of Health Anxiety...I was not anxious, overly stressed, etc. Well of course, now I am!! I asked, "Since I have been twitching this long, I assume something like ALS could be ruled out since I don't have many other symptoms?" He wouldn't answer me and said, "I think it's a good idea to see a Neurologist."

    So now I have to wait forever to even get in... I'm twitching like crazy, and going crazy all at the same time! I know there are other things that can cause twitching, including BFS, but my doctor is really scaring me by his lack of response and urgency for me to see a neuro. I have read numerous scary ALS articles online (bad idea, I know...) and many have started with simple body twitches.

    Please, offer any opinions on what this could be (other than I need to get my anxiety in check now...I'm fully aware )

  9. #9
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    Re: ALS/MS scare- terrified!

    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.
    __________________
    Nicola

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

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




  10. #10
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    Re: ALS/MS scare- terrified!

    Please read THIS as many times as you need to.

    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/

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