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Thread: Certain I have ALS, feel I will be dead soon

  1. #1

    Certain I have ALS, feel I will be dead soon

    Where do I start? I'm a first time user of any type of forum ever. Basic details as follows: male, mid 20's, registered nurse, anxiety since as long as I can remember with the worst being health related anxiety.

    The short version leading up to today: My wife left me in September which was a shock to me, I spent October in a deep depression, early November had a few episodes of SVT which I was hospitalized for and by mid November when I moved back in with my parents, all hell broke loose.

    I was having episodes of SVT almost daily and during those times I felt awful (near syncope, throat tight, short of breath, pounding heart of course, and dizziness/lightheadedness). It continued for a little bit but it eventually stopped bothering me once I realized I was triggering it with my anxiety. After that though, the dizziness continued on for a while. Actually the dizziness is still sort of there but not to the extreme it was at at all.

    So the second week of November I moved back in with my parents and that's when it all began. I felt as though I had a sinus infection of sorts within the first week of being here, but a weird one at that if that's even what it was. I had headaches everyday but not in the usual sinus regions and a constant pressure type feeling in my head. My ears were super full and my hearing was very muffled, it's still not all the way better but it's a far cry from what it was. Increased post nasal drip, etc. and what I can only describe as brain fog which isn't all the way better either but much better than where it started. I was forgetful and my short term memory sucked, that scared me the worst because I just didn't feel like myself but at this point my mental clarity is coming back. I would also get these weird shots of tingling with lightheadeness and the tingling would happen anywhere in my body multiple times a day, a lot of it occurred on the left side of my head and face split right down the middle to the left which only lasted a few seconds and would fade, never true numbness. Those were most of my symptoms with that and some still persist, and now let's move on to present day.

    Probably the beginning of December I still had some of the aforementioned symptoms like the occasional dizziness and brain fog but now I started to have muscle twitches. At first it was just in my right calf with some in my left. Then it was both. Then it was my calves, thighs, and occasionally above my waist at random spots like my abdomen, some in my back, neck, face, tongue, eye. The twitching has died down a bit since it started which I guess? I'm going to attribute to starting to take magnesium and b12. That or it's a coincidence that it slowed during the time that I took those, idk. My muscles cramp and feel stiff as if I had been doing squats all day long and I hadn't done a thing. I remember having my girlfriend stretch out my foot one night because the arch of my foot got that bad. The cramping is now lesser but the stiffness is still there especially when I walk I can feel it in my calves mostly. When walking down stairs my legs tremble with every step. I have a more noticeable essential tremor in my hands especially my right. Now my right wrist to hand is very tight and my right hand feels very tight and not as limber as my left. My writing is becoming messy and weird things just keep happening in general.

    I've had a head and neck cta which was negative, brain MRI negative, past lumbar MRI years ago that showed I don't have a disc at L5-S1 with degeneration moving upward, chest ct negative, abdomen ct negative, echo good, ekg fine outside of isolated svt, basic blood work good.

    I recently saw my GP who thought the muscle stuff was electrolytes that were off but they were fine and laughed at me when I asked if it could be ALS saying "you can't think like that man, even if it was what can you do about it?" And that was it. Really comforting.

    Anyway, I'm depressed now because I know deep down that I don't have long left on this earth and I won't be able to live a full long life. I know that I'm going to die soon and it will be because I have ALS. All I do all day is drive myself crazy with reading about ALS and reading stories of it. Literally that's all I do I can't get myself to do anything else. Down time at work? Reading about ALS. Not with my girlfriend? Reading about ALS. Day off? You get the point. Looking for some encouraging words to help me through my last days here on earth although I know (or at least pretty much know based on odds) that I won't be dead tomorrow, but I am convinced fully that I only have a couple years left at best. Thanks for your time and understanding.

  2. #2
    Join Date
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    417

    Re: Certain I have ALS, feel I will be dead soon

    You definitely don't have ALS.

    You have the exact same pattern of Anxiety I had. Granted the causes are different but I could've written that post in how your symptoms are progressing. I STRUGGLED (note the past tense) with ALS fears.

    I had rampant twitching, constant tremor, cramping and feelings of weakness. Infact I still have some of these things I just don't give a shit about it anymore.

    One thing to note in your post, if you truly had ALS, your twitching wouldn't "improve". It would suddenly stop and once it stopped you wouldn't be able to use the muscles or limb anymore.

    I know where you're at buddy, I went in to a deep deep hole where I was surrounding myself with stories of demise, despair and doom. It's a really horrible place and the more you do it the more you are creating the symptoms that make you think you're dying. It's a vicious cycle.

    I can't give you a miracle cure for the ALS anxiety. It's been said a lot here but time is the healer with this one. You will realise that you ARE NOT weak in any clinical sense and that you don't have ALS because of this. When that happens, your twitching will stop.

  3. #3
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    Re: Certain I have ALS, feel I will be dead soon

    The ALS rabbit hole is a deep and narrow one and very difficult to get out of. Frankly, your doctor was spot on regardless of the delivery.

    I've found that reassurance isn't effective in battling this demon so I'll say it directly. What you describe in no way shape or form (no matter what you've heard from Dr. Google) is related to ALS. ALS is about failing, not feeling.

    What you describe is in every way related to anxiety and stress and based on your life situation and it makes total sense. Look, I've dealt with real life health issues. Two heart attacks, bypass, stents and Stage IV head and neck cancer. For the last four months I've been dealing with a real life very serious illness with my wife and we're still in the middle of a Cat 5 hurricane concerning it. I can tell you first hand that the stress and anxiety due to past situations and my current one have taken a toll on me physically and mentally and I feel like total crap 95% of the time. BUT... I know what it is and it's nothing sinister. Sure, I could probably attribute some of my physical symptoms to some debilitating disease but I know better and you should too.

    The key to overcoming this is finding ways to cope with the irrational thoughts your mind is creating due to the stress you're under. Therapy and/or meds can be effective. Perhaps you should speak to your GP about that. Based on his reaction to your fear, I think he'd be all for it

    Positive thoughts
    Last edited by Fishmanpa; 20-12-16 at 20:40.
    __________________
    "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/

  4. #4
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    Re: Certain I have ALS, feel I will be dead soon

    Agree with both of the above. No amount of reassurance or encouragement will get you out of this.

    You need a therapist.
    __________________
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  5. #5

    Re: Certain I have ALS, feel I will be dead soon

    Thanks to everyone who replied. It's such a stupid thing because I can get on sites that talk about BFS or BFCS and boom all of what I experience is right there in my face and it should be an easy "no shit Sherlock" type thing but I just can't accept it. I know I need talk therapy or whatever or I'll go nuts. I'm waiting on my doc to call me with an appt to see a neurologist here hopefully within the month. I feel like I need to hear that I don't have it in order to move along. However, like I said, I'm totally convinced that I do have it. I don't care about how rare it is. Just because it's rare doesn't mean it's not possible, someone's still gotta have it or it wouldn't exist. Well anyway, thanks for your replies I'm glad to know I'm not the only one. Im hoping just general support until I know for sure one way or the other will just help me not totally lose my mind. Thanks again for the support.

  6. #6
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    Re: Certain I have ALS, feel I will be dead soon

    I'll place my bet now that your visit with the neurologist will result in an "all clear" In the meantime, please do not go on, join or post on any of the ALS forums. Unless you actually are dealing with it, it's disrespectful to those who are.

    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/

  7. #7
    Join Date
    Dec 2016
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    178

    Re: Certain I have ALS, feel I will be dead soon

    I'm sorry you are going though this. I am currently going through an ALS Health anxiety episode.

    Mine began a month ago and I have already lost ten pounds of weight (about 5 kilos) and have gotten myself into quite a depression. I have been through my fair share of health anxiety woes in the past (ms, esophageal cancer, heart failure, skin cancer, brain eating amoeba, etc, etc, etc) but I have to say that this one is the worst. I am living in agonizing fear!

    I also agree that your symptoms sound like anxiety and not ALS. I'm trying to help myself out of this hole by taking it day by day, starting antidepressants, seeing a therapist, doing yoga, and trying to keep busy. I also just started a clair weekes book on health anxiety. My therapist audiotaped a relaxation exercise and it is my assignment to do it every day.

    It really is a struggle and I wake up each day overwhelmed with the thought of living another day with this fear.

    Keep your chin up and good luck. Know that there are many of us here that have been through the same thing and felt just as hopeless. You are not alone.

  8. #8
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    Re: Certain I have ALS, feel I will be dead soon

    I feel like I need to hear that I don't have it in order to move along.
    I'd disagree. You need to address the underlying mental condition causing you to obsess on this.

    Quote Originally Posted by fishmanpa
    In the meantime, please do not go on, join or post on any of the ALS forums. Unless you actually are dealing with it, it's disrespectful to those who are.
    This, completely.
    __________________
    Check Out My Vlog - The Most Important Thing I Learnt About Anxiety
    How to Beat Intrusive Thoughts
    “Begin at once to live, and count each separate day as a separate life.” ― Seneca

  9. #9
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    Re: Certain I have ALS, feel I will be dead soon

    my money is with fishman's

  10. #10
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    Dec 2016
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    Re: Certain I have ALS, feel I will be dead soon

    You don't have it. I had a friend who did and what you are describing is not even close. Distract yourself, do something else, fight the urge to read about. I know it's difficult but if you can get past the initial urge and desire to read about it then the urge will slowly fade away

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