Reaction score

Profile posts Latest activity Postings About

  • Yes the Squantz poster scared me to death also. I can't pm yet is reason I am doing this. I've been cleared also numerous times but have so many symptoms that I seem to relate to ALS that it boggles my mind. I seem to handle the bulk of them but breathing difficulties are getting worse or at least to me. So yes his posting did unnerve me to the umpth degree also.
    If you were to take my full username from this forum, no spaces, and append @gmail.com at the end, you would find you have my email address. ;) Feel free to write any time. I usually only respond between Tues and Friday.
    I don't know if we're allowed to add email addresses on here but mine is goolia0475 @ yahoo . com (without the spaces) if you want to keep in touch that way.
    look at an isaacs syndrome page. just to give you an example of something that could be causing what you are experiencing. it could be; lyme disease, mito. myopathy, ion channelopathy, BFS, BCFS, Chronic Inflammatory Demyelinating Polyneuropathy, vitamin D deficiency, Vitamin B12 deficiency, anxiety/depression i could list like 20 other things that are all far more common than ALS. Go make a grilled cheese with bacon and watch some TV and relax. spend time with your kids.

    keep in mind many of the people replying to your posts have a very hard time doing so, and are doing it as a service to you (as ottowa girl mention below). Take their advice.

    I thought I was going to lose my mind at first and felt very alone because none of the doctors would listen to me. I do understand what it's like when no one understands what you're going through. Spend your time with your little girl and love every minute of it. Fill your mind with positive thoughts every day, NOT constantly strength testing yourself or comparing muscles. Do things that you enjoy. I got comfort from cuddling with my dogs. For some reason it helped, so I did that a lot. Also, check out the BFS page (benign fasciculation syndrome). Just Google BFS forum. That page and the people on it might be of some help to you! Good luck and let me know if you want to talk more.
    I took my time worrying ALS and tried to learn from it. It was like a wake-up call for me to learn to appreciate everything in life, everyday. None of us know how long we have left. I know how it feels to have so many issues. I just had brain surgery 4 weeks ago because of a condition called Superior Canal Dehiscence Syndrome. It's a condition where the person is missing a section of bone that separates the brain from the inner ear. I was misdiagnosed for quite a while and had horrible symptoms.
    I don't want to be rude - but honestly I type with one hand. I can't make my own supper and I can't pull up my pants. I had not one but two pee accidents yesterday. I have no more energy to devote to you. Please get help.
    Part 5

    This mental trainwreck of selection bias, twisted logic, and prideful exceptionalism is the real foe you are fighting. It is a tough one, and you're far from the first. Your docs have given you a clean bill of no ALS. Live joyfully in that reality, and let it remind you of what is important to you, what you want to invest more of your time and energy in - sounds like your kids.

    The End
    Part 4

    The way this works out in ALS/MND is this: there are a few really rare presentations or circumstances. 1% or 3% of folks who eventually are diagnosed with ALS are one of these rare people. People suffering from health anxiety hear about these rare cases, the ones that they can't be definitively ruled out of. Then, almost every single one, goes through a phase of being convinced that they, unlike all these other worriers, are that 1 or 3%. Peculiarly, they are not convinced this way about other things - they will each walk out of their doors that day convinced they are not in the tiny percentage of peole who will be in a car accident that day.
    Part 3

    Then there is the other side - once selection bias has slipped you a false view of the world, human nature plays another trick. Humans are very persistent in always believing they are the exception to the rule, they are the ones that aren't average, etc. A common speaker's trick is to ask, when speaking to a group with a common profession, "How many of you consider yourself above average at your job? Raise your hand if so." Lo and behold, 70-80% of most rooms raise their hands. Obviously 80% of them can't be that, and they laugh at that realization, and many still don't come out realizing, "Maybe I'm one of the average ones."
    Part 2

    You have to realize that the vast majority of PALS have the "normal story". 99.99% of people who have ALS fears and a clean EMG never develop ALS and just move on. But you don't read posts arguing about or highlighting those things, because normal things don't cause people to post or write articles or what have you. Weird things do. So you are going to spend a lot more time reading about the weird than the normal. In this case, I don't even know what you mean by "those posts" - these things that obviously loom large in your mind haven't even blipped on my radar.
    Part 1

    It's no problem, Teresa. I think what you are struggling with is selection bias. (Selection bias is a real issue on the internet. It starts to seem like
    TONS of people have whatever problem you are interested in, because you end up places where healthy people have no reason to be. It's easy to forget all the people not present, posting, or interested that make up the majority of the world. The mind measures what it can perceive well and sucks at measuring the empty spaces and lack of things.)
    Stop worrying. If I were you, if you still feel there's something wrong in 6 months, go back to doctor. Meanwhile live and stop obsessing. If you need help with that aspect, seek counselling. Anything is better than doing what you're doing to yourself.
  • Loading…
  • Loading…
  • Loading…