Hey Lemmy,

I haven’t been doing well lately. I’ve had widespread and slowly progressing neurological issues for a couple years now - random pain and muscle twitching in my whole body, vision disturbances and damage, dysautonomia, and more. Virtually every individual thing my body could sense had weird, erratic behavior.

The U.S. healthcare system has been too slow to fully diagnose me, much less treat me.

I wanted to believe I’d be able to live with this condition, but recent events have changed that perception very quickly. This week, I lost the ability to breathe normally, and started having large-scale violent movements when going to sleep (e.g. my arms would fly off the bed or I’d suddenly lurch my body forward). At this point, I have to read the writing on the wall: there is something very wrong with my brain, there is an unknown, uncontrolled process damaging my central nervous system, and it has now gotten ahold of my vital functions. This very well may be the end, and I may leave this world at age 21.

My mind reacted to this news in a peculiar way. Instead of becoming extremely anxious or depressed, my mind suppressed these thoughts and started flashing some of the happiest memories back through my mind, telling me what I good job I did and achieved so much in what little time I had. I had so many meaningful and joyful experiences even if I could never lead a conventional life. There are so many amazing things to learn, awesome video games to play, cool projects to build, and adorable cat pictures to fawn over. My life was vibrant and filled with so many amazing and wonderful experiences. I loved being alive and I am so grateful for the privilege to exist.

So, my question is, what would you want to do in your final days? What kinds of things would you think about and do? What would you revisit? Would you like to spend your final days at home or go to a hospital and try to stay alive for as long as possible? It’s getting a bit hard for me to think now, since I can’t really sleep anymore, so I think some of your ideas will help me.

  • kromem@lemmy.world
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    11 months ago

    Looking at this post, your last one, and some of your comments – is your iron low?

    POTS, breathing issues, movement issues especially when sleeping, nervous system pain - there’s a ton of symptoms that can be associated with low iron and you check off a number of them.

    And the numbers of what’s ‘normal’ are currently having their threshold lowered across various institutions. If you have a low serum ferritin, you might want to talk to a neurologist that’s open to the idea of some of your symptoms being caused by iron deficiency. It’s an easy fix (if you are low enough they can just jump you to IV iron).

    Depending on how up to date your neurologists were, there may be a much simpler solution here than preparing for the end.

    Given the normal test results, it may also have components of a functional neurological disorder, which is kind of where your brain gets used to abnormal behavior and extends it even if there’s not a separate mechanical issue going on. It’s not really treated seriously enough by most neurologists due to its history of being considered ‘faking’ neurological disorder even though that’s no longer how it’s seen by specialists and there really are mechanistic aspects to what’s going on.

    The iron deficiency would be an easy fix that could be flying under the radar of legacy guidelines for deficiency. If there’s functional components, getting a referral to a functional neurologist would be important as the longer FND goes on the harder it is to treat.

    I’m sorry you’re going through all this, but know that while it can feel hopeless, sometimes finding the right provider can make a world of difference, especially if what’s going on with you isn’t a cookie cutter situation.