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  • Hi, Tokahfang...Just got the news from my neuromuscular doc a few days ago that my diagnosis is PLS. Never heard of it until he explained it to me. And reading your post explains my situation. I was starting to think I was nuts..;) Thank you for the enlightenment.
    Hello there.
    May I ask question?
    I just posted new topic under Do I have ALS headline. When the post get confirm by mods? Do you know?
    I know it's stupid question but ı registered 10 min ago and really don't know how it works. And also i want to some advice and opinion about my topic asap as everyone else.
    Sorry for disturbing you with these stupid questions. Thank you.
    So yeah, I still say ALS has ruined my life whether or not it is what is killing me. Yet, I know deep down. The never ending fascics in my diaphragm and body are the dreaded killer. I just didn't think it would take my breathing so soon. Every day I'm suffocating just a little bit more. I'm so terrified of the end. Caught in a whirlwind of Drs that don't listen. I've just about given up hope. Yet my complaints are nothing to the human suffering that ALS is causing right now as I type this. There are many out there that wish they were back in the position I am now. So where does that leave me? It kinda feels like no matter what I do my suffering goes ignored, compared to the next person. I'm invisible.
    I can't PM you back so I will just communicate my reply here. I totally understand what a DIHALS situation can do first hand. It destroyed my family, many relationships. As it gets harder to lift my diaphragm I am getting increasingly bitter. My mother whom I share a house with sees me on the couch laboring to breathe day in day out and choses to treat me with nothing but anger and hostility. Not even a month ago I was caught in the middle of a scene where I was crying about my breathing and my arm (couldn't take anymore and sort of erupted) My sister was here and next thing you know i'm shouting every obsenity I can't muster the air for while my mother and sister stood over me clamoring for me to get a gun and kill myself. I had a moment of clarity where I wondered just how I got here. Before you know it my sister jumped on my and tried to strangle me in every literal sense. I was wide eyed and begging my mother to intervene but she wouldn't.
    I appreciate it though I really am beginning to see how unwelcome I am here. This has really been an eye opener for me. I've really made myself unwelcome almost everywhere in my life since ALS/MND entered it. I'm just going to step back and read from now on, it's clear to me I can't contribute just yet and noone is interested in my experience; though I'm glad I kept my dignity by staying honest about my diagnosis when it would have been easy to just say "I have ALS". I'm still hoping for a differential diagnosis even if the hope is running out. That being so, I can't walk away without expressing appreciation for the value i've gotten and continue to get so thank you.
    I also wanted to add if I may: I don't know what to believe anymore with my condition. I haven't been tested for CIPD MMN or any of the diseases 'when it wasn't ALS' stickies. I'm caught in a whirlwind with 2 Neurologists (One who is the Jesus of stem cell research and EVEN specializes in the diaphragm DR Nanette Joyce of UC Davis). I'm couch bound with a medi-cal pulm who won't consider a Bi-pap until March. I've lost 50 lbs (was 400 lbs) thinking it was my weight and my weakness in breathing continues to degrade. The unrelenting cramps and fascics in my diaphragm side and chest continue. I'm suffocating in a fat suit with a FVC of 70 ish. I have no choice but to keep coming back here and read. I guess all I can ask for is mercy. Please let me ask questions. I find it impossible to ask without including information about my experiences. Isn't that the nature of questions? I don't know...that is all I got.
    I realize at this point that this community is modded with an iron fist as to which the barrier to entry is more than just limited to a diagnosis of ALS. I think it's important to remember here that I've been restricted to not posting about myself which doesn't allow me to make updates. It's been a month since then. Things change as do the progression of this awful disease. I realize that this community is full of sick, miserable, dying people and is a toxic nesting ground for friendship esp for someone like me with a personality that has proven to not mendwell with the hivemind. That being said, I kept reading, I found some helpful tips and pulled my chart from UC Davis and read the awful 'probable ALS' verbage with my own eyes. I knew I wasn't breathing right and the fasciculations were there. But that chart. My heart was played with enough, I thought it was over. I just wanted someone to relate to with my breathing issues by asking Nebhra. Can't I just do that?
    I will say that from jumping further down the rabbit hole of this forum I found an incredibly helpful tip from a couple CALS who mentioned clearing of mucus. This made me more aware of clearing my throat which eases my breathing slightly.

    I truly believe that this community has pushed away a rare 27 year-old thoracic onset ALS patient. Just sayin. I wish I could have been treated differently in the beginning instead of being used as a punching bag for a couple of PALS that were having a bad week. Yet somehow i'm still paying for that. What a shame I think.
    So it's Monday and I'm unbanned. Great...I've really lost the desire to reach out for help in my current situation so I won't be posting in DIHALS much less ask for permission. I sincerely doubt there are any PALS who are severely affected in their breathing with enough energy/mobility to respond to me anyways. I'm currently couch-bound. The weakness inspiring air has found it's stasis in a nice balance between feeling like i'm suffocating to lifting weights like a never ending workout in my chest/stomach with those lovely cramps in front and behind my chest. But there I go talking about myself I banned again?

    Now we’re moving fast we’re picking up on speed we got no energy creating fast as we tunnel deep & no time to think here we just react to the things we need hold on to your world

    Look around there’s no time left to stall
    (you’ve got to) stand up while you can don’t miss the call

    To live just in your mind is some kind of crime stuck in your station in isolation never too late for beginning to set your captive free

    Tonight the moment has arrived
    to live while we’re still alive
    It's called "The Call" By artist: 311
    Lyrics: We could say it’s just how it is and how it always will be and believe things will never change as far as we can see it’s a disaster and it doesn’t matter well I disagree a ray of hope remains if we take the reins we’ll arrive eventually

    Keep all the lights on in the streets of Babylon then we’ll just dig for some more pull back the curtain cuz one things for certain action speaks louder than war

    Hold on here we go where we stop nobody knows breath and count to five live while you’re still alive right before your eyes your best laid plan up and dies cleverly disguised the bounty materialized
    Hey Beky, sorry I just had to come back and share with you a little encouragement I think might be beneficial to members here. It's a song and when my right foot dropped and I felt the first pangs of paralysis, this song got me through esp when I believed and foresaw ALS in my future. THis song touches ALS in it's final form. For those who don't want to listen, I will post the lyrics. Just trying to be helpful respectfully from the outside.
    Sorry for the jumbled posts, I had to pick apart and trim my messages because of the character limit. I meant to say the enventration (atrophy of my diaphragm) explained my difficulty inspiring air but there were no UML or LMN signs including tongue EMG to say ALS. My FVC was also 100% even though my diaphragm drops into intense weakness inspiring at random. So bottom line if you don't read anything else. The diagnosis is "They don't know but its not ALS". Thanks for everything.
    Anyways this forum has taught me a lot of about the character and suffering of ALS yet I respect and am aware I have no Idea. This is why I am hereby clamoring to find out how I can be a CAL as I have learned so much and mourned for so many that I think I am strong minded enough and compassionate to give my life and my time to one lucky patient. I will be their best friend and shoulder to cry on. I am of strong will and very emotionally aware. I was raised by strong feminists on my moms side of the family and have had the gift of emotional understanding given to me from birth. Thanks to those who supported me and to those who told me to kill myself I forgive you. Clearwater AL or MAX I forgive you both. I pray for remission for all of you. I have collected a long list of names for my prayer group even if that isn't your thing guys. Anyways now it's my mission to find a PAL accepting of my me and I am ready for this journey.
    Hey Beky, just wanted to let you know that I am leaving this for good, not for an angry reason but for a good one. Just came back from UC Davis and was undiagnosed. She basically said she doesn't know what is wrong with me. She couldn't find any ALS in me despite me clamoring for a needle EMG of my tongue (because of the slurring). She did an ultrasound of my diaphragm and did find fatty infiltration and enventration (atrophy) yet me FVC was 100%. She said by now I would have had UML/LMN signs elsewhere and could not find them. She also said my hypperflexia is true but untrue. She said it was symmetrical and put me at a +2 but I have a negative hoffmans and plantar. SHe said i'm better off going the PCP refferrel route and getting to the bottom of this via the slow way because she does not see ALS in me whatsoever. The previous DOC saw 'irritation' of my nerves and also the atrophy in my diaphragm as well as the partially paralyzed hemi diaphragm but today that has gone away.
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