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Thread: Fearing ALS

  1. #11

    Re: Fearing ALS

    Thanks for the post Whome, its nice to hear stories of people who have come out the other side and are fine. It's just so draining, one minute im feeling a bit better and more positive then shortly after ill be in a complete state after feeling a new twitch or tingle etc and it starts all the worrying off again. I just dont know what im being hypervigilant to and whats due to my psychological state anymore and its doing my head in. Im walking round doing all these things to test my strength and movement abilities and the moment something seems slightly off it scares the hell out of me. Is it possible to be hypervigilant to your body without actually thinking you are i wonder?
    Main things im dealing with are a fizzing/tingling feeling in my legs mostly when sitting or laying down. Twitching going on a fair bit aswell. Ive also seemed to have some excess saliva occasionally but i did briefly see something about that being a symtom of ALS so it could be my mind playing on that. I didnt know if the issue with saliva in ALS was because people cant swallow easily though and thats what im hoping as opposed to the body just making more. I darent look it up. I totally know what you mean about the hoping the diagnosis is MS thing. MS was originally the thing i was worried about in relation to all this but when i started seeing things about ALS it totally freaked me out and now im exactly the same as you, ive told myself i hope it is MS as the alternative in ALS is so much worse. Thats not to be disrespectful to anyone with MS as its clearly a tremendously hard thing to cope with day to day. Its just not ALS.
    Im supposed to be going on holiday with family in a couple of weeks and right now im not even looking forward to it half the time. Just sick of the constant backwards and forwards in my mind over the cause of these sensations. Ive been seem by two doctors and had strength and reflex tests etc which were all fine. Ive also had every blood test under the sun. Im being referred for some nerve conduction tests and petrified tbh :(
    Last edited by daytona1; 31-08-19 at 13:48.

  2. #12
    Join Date
    Aug 2019
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    38

    Re: Fearing ALS

    Thank you for sharing everyone.

    I feel like i've had every test under the sun since this started extensive blood work. Ultrasounds, CT scan, Lyme disease testing, autoimmune testing. I passed every test so far. Having an MRI never scared me but the nerve study is what is causing me to completely buckle. Waiting for tests is a nightmare as everything takes so long. We will see what the MRI of my c spine shows if anything. I don't want to have anything but part of me would be even more scared if nothing shows in the MRI at all. I almost want spinal stenosis or a pinched nerve anything. I put this ALS idea in my own head and I wonder why did I go immediately to the worst case scenario. I wish they actually did an MRI of my lumbar spine and pelvis as it is the only part of my spine that is not fused after scoliosis surgery. I have joint pains but I also have been very inactive since June mainly due to the depression and fear of my rhabdomyalysis coming back. Aside from walking I have not done anything else. The self testing is daily for me. I used to take my work over my health and killed myself working. Now I am just hoping I can get through this. My family wants me to get motivated to start living. Having this unknown cloud over my head feels like my life is just on hold.

  3. #13
    Join Date
    Aug 2019
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    140

    Re: Fearing ALS

    I can completely relate to how you are feeling right now. I am just now coming to terms with the fact that I have health anxiety and I am in a bit of a state with it presently but it’s not even close to the hell I went through when I had ALS paranoia.

    I read, researched and studied everything I could find on ALS (I can’t even begin to tell you what a bad move that was) that being said, something that I do remember reading is that it does not cause an increased production of saliva. It is due to weak muscles used for swallowing and also going off of what I read. that it doesn’t cause buzzing, tingling, pain, etc. really. It is about weakness and wasting. You already said you passed your tests for that. Feel a little better??

    My twitches started in my right cheek. Kind of like an eye twitch. When I googled muscle twitch in the face, I was flooded with stories of MS and then ALS. After all of the reading and the real paranoia set in, the twitches moved to all over my body. I twitched all over my body all the time! Even though I felt like my arms were weak, I passed my strength tests at the neurology clinic. He told me I had perceived weakness but I did fine in all testing. My reflexes were overactive but he said it could be my normal (I wonder if it’s not bc I was in such a heightened state of alert...I felt like I could’ve jumped out of my skin all the time during this time. Anxiety?)

    My symptoms were REAL just like I am sure yours are as well. It was just that I took my real symptoms and threw anxiety on top of them and amplified them into a terrible, terminal illness. Google didn’t tell me it could be myositis or some other reasonable explanation and to make matters worse I allowed my anxiety to take that misguided scenario that was put in front of me and turn it into my own little dark reality In my own mind.

    I know this reply is forever long but I truly feel for you guys going through this!! I wish I could help in some way. I know you are terrified of the test. So was I!! But the only way through it is through it and you will so much better when they tell you that you are fine!!!


    Sent from my iPhone using Tapatalk

  4. #14
    Join Date
    Aug 2019
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    140

    Re: Fearing ALS

    AJG, just remember that even if your MRI is clear, don’t panic. Mine was perfectly clear as were all of my blood tests for tick borne diseases, vitamin deficiencies, electrolyte deficiencies, you name it. The only abnormal on testing that showed up was mild neuropathy in my hands. Like I said, you will feel so much better when your conduction testing, etc is done and you hear that it is all normal I know there is nothing I can say to make you feel better until then but looking forward to the update posts when you guys are clear of testing and this is behind you. It’s a great feeling!


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  5. #15
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    Aug 2019
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    38

    Re: Fearing ALS

    It does make me feel better to hear this. I developed this extreme health anxiety years ago but not to this point. It really all started with me going to a random reflexiologist about 7 years ago. This woman freaked the living life out of me and basically said i need to be saved after I told her I have metal in my spine. She went as far as coming after me as I'm leaving the clinic and said to me, do you want a husband, do you want kids go get yourself tested. Your eyes are not even clear. All that metal is affecting your entire system.Never told me what I should be tested for and I did not ask. The rational part of me is like ok this is some woman trying to get more business out of me by making it seem like I'm on my death bed. Also she is not a mind reader. The scared part of me is now what if she was right and now all this is coming true. I think the only comfort I have right now is that I have not failed at anything but the irrational part of me wonders if I will just wake up paralyzed in my bed or fall. As a kid having massive spinal surgery was a walk in the park compared to this. I always expected some minor issues caused years after surgery such as osteoarthritis before I'm 40 but I don't even have that. I've been told common things are common by many doctors. The only real change before all this was me going on antidepressant. I don't even trust doctors it seems until those tests are done.

  6. #16

    Re: Fearing ALS

    Whome the messages really do help and nice to hear that some of the things i was worrying about dont fit with ALS. Fishmanpa also linked a really good article which states that tingling isnt indicative of ALS and thats my main symptom currently.

  7. #17
    Join Date
    Aug 2019
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    140

    Fearing ALS

    AJG, this woman followed you outside ranting these things at you?? Ugh!! So she planted another fear in your mind. I am sure that with all it sounds like you have been through at such a young age, it must’ve been traumatic. From what I am understanding, health issues can send some of us into a tail spin of anxiety over the future and I am sure that her ranting these things at you didn’t help you one bit! Do you feel like if you hadn’t had the implants she would’ve just came up with another issue to call you out on? I wonder if that’s not the case . I am not very familiar with reflexologists (and no offense if there are any reading this) but where did she get the skill to be able to look into your eyes and tell you that you are poisoned and to just “know” that metal is affecting your system?? That really irks me that she did you that way.


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    Last edited by whome; 01-09-19 at 04:54.

  8. #18
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    Jun 2019
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    281

    Re: Fearing ALS

    For the last four days I’ve been having twitches and burning in my legs when lying down like they’re super sore from exercise but I’ve done nothing. I actually have been mostly in bed or on the couch for the past three months in a state of super high anxiety.

    When I walk around my legs are weak to the point of trembling when going down stairs and I’m feeling the weaknesses in my buttocks too. Kind of a feeling of hollowness and weakness in the legs.

    They don’t feel numb I can still feel things but they’re in a constant state of soreness and weakness.

    Is this a common symptom of MS or ALS? Is it the three months of anxiety, undernutrition and probably dehydration manifesting that way? Kind of a cortisol overdose?

    please help folks I’m freaking out that I’ll become paralyzed

    I just switched to Zoloft from Celexa so maybe some withdrawal?

    I’ve also been dizzy for months with twitches all over, face, back, legs, arms. I got a clear brain MRI so doctor says MS ruled out but I know it’s not true. I asked to see a neurologist but the wait is long.

    please help. ☹️

    Feeling devastated and scared. No idea what I could have other than MS or ALS.
    Last edited by Seymour; 01-09-19 at 16:27.

  9. #19
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    Re: Fearing ALS

    Quote Originally Posted by Seymour View Post
    For the last four days I’ve been having twitches and burning in my legs when lying down like they’re super sore from exercise but I’ve done nothing. I actually have been mostly in bed or on the couch for the past three months in a state of super high anxiety.

    When I walk around my legs are weak to the point of trembling when going down stairs and I’m feeling the weaknesses in my buttocks too. Kind of a feeling of hollowness and weakness in the legs.

    They don’t feel numb I can still feel things but they’re in a constant state of soreness and weakness.

    Is this a common symptom of MS or ALS? Is it the three months of anxiety, undernutrition and probably dehydration manifesting that way? Kind of a cortisol overdose?

    please help folks I’m freaking out that I’ll become paralyzed

    I just switched to Zoloft from Celexa so maybe some withdrawal?

    I’ve also been dizzy for months with twitches all over, face, back, legs, arms. I got a clear brain MRI so doctor says MS ruled out but I know it’s not true. I asked to see a neurologist but the wait is long.

    please help. ☹️

    Feeling devastated and scared. No idea what I could have other than MS or ALS.
    Can you add this to your own post please. Thanks
    __________________
    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

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  10. #20
    Join Date
    Jun 2011
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    Re: Fearing ALS

    Quote Originally Posted by Seymour View Post
    For the last four days I’ve been having twitches and burning in my legs when lying down like they’re super sore from exercise but I’ve done nothing. I actually have been mostly in bed or on the couch for the past three months in a state of super high anxiety.

    Feeling devastated and scared. No idea what I could have other than MS or ALS.
    You have your answer right there. Not being trite, but 3 months of super high anxiety is like a workout 24/7 for every part of your body from your brain to your toes.

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