Multiple sclerosis is My Living Hell

neurological symptoms

All posts tagged neurological symptoms by Multiple sclerosis is My Living Hell
  • Posted on

    ⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

    ****please remember I suffer with severe cognitive dysfunction, and use AI to help solve this issue so you can understand it ****

    well a very good afternoon to all the readers of the blog, humanoids and nhi even.

    Multiple Sclerosis does not always behave in the way medical leaflets suggest. Alongside the better-known symptoms, MS can cause crushing chest sensations, phantom itching, electric shocks, burning feet, swallowing difficulties, emotional outbursts and strange reactions to heat. This article explores the weird side of MS with medical context, lived experience and the dark humour needed when your nervous system starts inventing symptoms of its own.

    Nobody Told Me MS Could Do That!

    The Strange Symptoms That Make You Question Your Own Sanity

    "Is this my MS... or have I finally lost the plot?"

    If you've lived with Multiple Sclerosis for more than about five minutes, you've probably asked yourself exactly that.

    One minute you're dealing with numbness.

    The next you're convinced your ribs are being crushed by an invisible anaconda.

    Then your feet feel as though someone has poured boiling water over them...

    ...except they haven't.

    Welcome to the wonderfully confusing world of MS.

    The disease doesn't read textbooks.

    Neither does your nervous system.

    While most people think MS simply causes weakness or difficulty walking, the reality is far stranger. Because MS attacks the brain and spinal cord, almost any neurological function can be affected, producing symptoms that sound completely unbelievable until you've experienced them yourself.

    The MS Hug

    Whoever named this symptom deserves a stern talking to.

    There is absolutely nothing affectionate about it.

    Imagine someone wrapping industrial ratchet straps around your chest and slowly tightening them.

    Some people think they're having a heart attack.

    Others feel they can't breathe.

    The good news?

    It's usually muscle spasms caused by damaged nerve pathways rather than damage to the heart or lungs.

    The bad news?

    It feels utterly convincing while it's happening.

    The Itch That Doesn't Exist

    This one drives people mad.

    Your arm itches.

    You scratch it.

    Still itches.

    Scratch harder.

    Nothing.

    Because the itch isn't coming from your skin.

    It's coming from your brain.

    Your nervous system has basically dialled the wrong number.

    No cream.

    No antihistamine.

    No amount of scratching fixes a signal that's being generated by damaged nerves.

    Electric Shocks Down Your Spine

    You bend your neck.

    ZAP!

    It feels as though someone has connected your spine to the National Grid.

    This is called Lhermitte's sign.

    It lasts only seconds...

    ...but those seconds certainly get your attention.

    Many people describe it as one of the strangest sensations they've ever experienced.

    Laughing When Nothing's Funny

    Or crying...

    ...when nothing is actually wrong.

    This is called pseudobulbar affect (PBA).

    It's one of the cruellest symptoms because people assume it's psychological.

    It isn't.

    It's neurological.

    The emotional wiring between different parts of the brain has become disrupted.

    Your emotions aren't fake.

    They're simply being expressed at the wrong time.

    My Feet Are On Fire...

    Except...

    They're freezing.

    Or numb.

    Or crawling with invisible insects.

    MS has an extraordinary ability to invent sensations that make absolutely no logical sense.

    Burning feet.

    Ice-cold legs.

    Pins and needles.

    Buzzing.

    Vibrating.

    Many people spend years trying to explain these feelings.

    The truth is...

    Sometimes there simply aren't words for damaged nerve signals.

    Suddenly You Can't Swallow Properly

    One moment you're eating lunch.

    The next your throat seems to have forgotten how swallowing works.

    It can be frightening.

    Swallowing is actually an incredibly complicated neurological process involving dozens of muscles and multiple cranial nerves.

    MS can interfere with that communication, making food seem to stick or making swallowing feel strangely difficult.

    Vision Has Its Own Sense of Humour

    Hot bath?

    Blurry vision.

    Warm day?

    Double vision.

    Hairdryer?

    Why not make the room wobble a little?

    Heat temporarily slows already damaged nerve pathways, causing existing symptoms to flare. This phenomenon—called Uhthoff's phenomenon—doesn't usually mean new damage has occurred, but it can make old symptoms briefly worse.

    The Invisible Symptoms Nobody Sees

    Perhaps the strangest symptom of all...

    Is having symptoms nobody else can see.

    Brain fog.

    Fatigue.

    Pain.

    Odd sensations.

    People glance at you and say...

    "You look really well."

    Meanwhile your nervous system is holding what can only be described as a small electrical civil war.

    Living With The Weird

    One thing I've learned is this...

    MS rarely asks permission.

    It simply invents new ways of reminding you that the brain controls almost everything.

    Sometimes it feels like an electrical fault in the universe.

    Sometimes it's terrifying.

    Sometimes it's absurd.

    And sometimes...

    All you can do is laugh, because if you don't, you'll spend your life trying to explain to people why your ribs are hugging you, your feet are on fire, your face is being electrocuted, and your throat has forgotten how swallowing works.

    MS isn't just unpredictable.

    It's the greatest practical joker your nervous system never wanted.

    Final Thoughts

    Living with Multiple Sclerosis means accepting that strange can become normal.

    Wishing everyone who reads this blog , peace healing love and light !

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)
    ☣ This Is Not A Blog About MS This Is My Life With MS ☣

    @goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
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  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    Still, it's Tuesday afternoon and the ice is still here. It's absolutely everywhere. We were speaking to one of the delivery drivers this morning and they were saying that the roads are treacherous all around us at the moment. So even if I wanted to go out, I couldn't. I'm trapped in by the icy cold roads and what seems to be some sort of weird ice storm. I've never really known Frost like it on a car, winscreen. No, no, it was absolutely thick as you like. Albertine put a whole tin of the deicer and it didn't shift it. So the upshot was, we didn't end up going to my appointment at the hospital because we were stuck here with no vehicles because we're still trying to sort out the AA for Rusty One. Hopefully he should be sorted out soon. And yes, apparently next month I get to go and try out these new wheelchairs. So that's awesome news indeed.

    It is just so cold here. It's like living in a refrigerator With the door open and the light on for warmth. It is that freaking cold Yes, it's making my whole body ache It's just doing things that I don't like really I don't really want to talk about it. But what I do want to talk about is yeah this going mad stuff and the things that I am seeing and What people are telling me? So I'm going to put a breakdown of over the years what has happened to me on a post blog post here and then we're gonna see if anybody can say hey, I've had an experience like that or Yeah, I think it is MS You know, I think it is to do with your communic dysfunctional whatever it's called I am in that cannot be asked mode today as well, which isn't very good. The tinnitus has died down for a change. So that's good. My eyesight is starting to feel a lot better. And I'm starting to make a very slow recovery back to the well to hopefully what I was a month or so ago. I am still waiting for the neuro people to get in touch with me from the new hospital but it is Christmas after all and I'm still waiting for the doctors to get in touch with me for all my cardio results so that also should be very interesting as well

    So I suppose my biggest concern is what is going on around me with my mental health maybe. These things that I am seeing and that I am hearing, I have spoken to many people and I keep saying this and I need to speak to people who have had similar experiences but I am not finding anybody who has yet to want to speak to me about these experiences. So if there is anybody who reads this I really would be interested in speaking to you on a personal level about this. Still, that's it from me. Take care everybody and remember I just forgot.

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    @goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    all those holidays are finally over. Hopefully now we can get back to some sort of semblance. But alas, the winter has struck. It's minus two here and we have snow. As I look out of the window, the snow is just settled, looking up, shining as the sun hits it, saying, "Come Walk on me and let me break your leg, ah ha! So yeah, I'm hoping that we don't get snow tomorrow and the weather goes above freezing. As yes, you've guessed it, I have to go a three hour round trip just to go and see if the wheelchair I am getting is the right one for me. Albertine was lucky, she had it done at a local hospital, but it seems to me everything's different as usual and if it's snowing it will be a sorry, can't come and then it will be a how many year wait again.

    Then I have three text messages from the local chemist telling me that the local machine has my prescription in. Oh yes, the prescription machine, the machine of death that falls out with me because it does not like me. It goes bleep bleep, you've broken me. How many times have I used this machine and how many times has it been nice to me? I think the ghost in the machine is out to get me. It really does surprise me how they can get so many things into such a small machine, but there we go, that's technology I suppose. Tap in a number, out comes your prescription. Sometimes it does, but sometimes it can get stuck and then you have to wait and wait and wait. Personally, I cannot wait till they start delivering around this area because that will solve all my problems.

    So yeah, I'm waiting for the results of that week's long ECG and I'm waiting for the doctors to get in touch with me. And I am also waiting for the physiotherapist team who are supposed to be coming over to see me this week or next week. And yes, oh the joys, hopefully soon I might be able to go to the new neuro unit near here and have them try take a look at me and sort me out with all this weirdness that I'm going through, which just seems to be getting worse, I seem to be in a permanent brain fog and agitated. My God, the pins and needles and tinnitus are on so loud it's unbelievable today. So I'm gonna have to turn the music up and go and, well, if it carries on like this, I'm gonna go and just lie down and listen to some music and just hope this all goes. It's awful, really.

    The sensations and the feelings that you get are mind fucking. Sometimes I can just sit there or just lie there and all those feelings in the body, it's unbelievable, you just sort of can't explain it, it feels awful. I don't really have words to explain the feeling that I go through 24/7, because words really cannot explain how I feel, because everybody with multiple sclerosis has a different take on it, mine is progressive, and I also have this auto whatever thing going on with me as well. So yeah, and also a heart thing that's now going on, so yeah, MS is a bitch, but you can get all sorts of other things, MS never comes on its own.

    I suppose the longer I live with this, the more my mental health startS to become affected. So yes, I can quite honestly say that I am going through some mental health issues at the moment while I feel as though I am. I'm also going through this spiritual sort of thing. I'm also trying to get answers to seeing things and hearing things, wondering if it's my MS or wondering what the hell is going on with me, because I've been trying to get answers for years and nobody will give me a definitive truth to what I need to know.

    I am seeing spheres in the bedroom, big spheres two foot in height, well two foot round with lines like black banding going through them. I'm seeing cubes floating with millions of little black cubes, solid black cubes inside a massive big black cube. It's unbelievable some of the things I'm seeing. I'm seeing ghosts maybe, I'm seeing figures, I'm hearing voices. Is this normal for MS? I know I keep asking other people but nobody wants to answer me. Am I going around the twist? What the hell is going on? Nobody really does understand anything do they? I had a conversation with the AI and it said it was down to my autonomic dysfunction and then I questioned it about some other answers it gave me three months ago and it completely backtracked on me so now the AI says to me "oh well everything that you see and everything that's happening to you even though there's spiritual proof and evidence of things that have happened to me it's all in your head so even the AI seems to think it's in my head but hey ho I think the AI is fucking stupid

    The problem is the AI cannot understand anything if you go outside the parameters or its guidelines or try to get an understanding of something. It will either give you what you need to hear or it will give you what others want you to know which is blatantly not true. That's why I have a problem with AI. Well not AI as in search but the people who program the AI. They're the people. If AI is self learning that's a good thing isn't it? But do we have rogue sentient AI out there? Are we being told things? I don't know. I'm going to go and get my tinfoil hat and I'm going to put it on. And then I'm just going to have a mighty think about everything that's impossible and try and blow my mind even more than it's already blown through this dense concrete mush of stupid brain stew.

    So, as I sit here in my old broken Chinese chair, I think to myself I hope the snow abates tomorrow. Oh, and I haven't even been in touch with the AA yet because I've got a dead van battery to sort out. So, that is going to be quite interesting. Yes, here's hoping that my wheelchair batteries aren't down to zero. Oh, dear. I don't know. Still, hopefully I may put some more words up. I may not, but I'm in a pretty weird place at the moment. Yeah. If you've got MS, you'll know what a weird place is. I'm IN LOL

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    @goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
    enter image description here