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I am a big cry-baby. Haven’t shared out of fear because I know I am. 2013 I started feeling what I thought were strokes. Being from a small town I went to the ER and told the doc there what was happening. At times it felt as if my body was trying to “force itself” back into fetal position. (totally paralyzed in the right side dropping me to my knees ) and him, doing all he knew how to, was send me home with methocarbanol and said it will pass. I knew it was more so had fam drive me to sacred heart ER where a lot of tests were done including a lumbar puncture then i was diagnosed. My world shattered around me. I went 21 days without being able to eat a solid bite of food. Living off of powerade started falling down and barely being able to walk before i was admitted doing a dose a chemo. Since then I can eat better, if its at night. but my walking hasn’t come back. I see old peeps who are faster than me now a days. I barely can walk with a cane anymore and need a wheelchair if it comes to distances. I feel broken inside and out anymore. cant to crap for myself anymore. equilibrium, dexterity, motor functions, memory, social skills, gone. I am a caveman and isolate extremely because I don’t want the world to have to deal with me. I am 36 and seem to need a caregiver/babysitter. And when I thought that was bad! Than I get hit with Trigeminal Neuralgia. I thought loosing the ability to walk right was bad, Hell take it! as long as I never have to feel that pain again! I am already on over half of the max dose of carbamazipine, Lemtrada after tysabri… here I come along with the lazer surgery i’m gonna need after the carbamazapine wears off. may loose half of my face but compared to pain that is beyond livable hence, “suicide disease,” TAKE IT!… I used to actually cry at my 1st IV appts i’m that much of a wuss. now it’s nothing Im so used to it,.. Was an alcoholic bad. Then when i started to walk funny and fall down even though I was sober.. I said hell with it. If the world sees me as a drunk even when I’m trying now to be. Why try? it also gives me the hunger to want to eat once a day. If that means I have to force my body into submission or survival mode to eat everyday so be it. At least im eating. I have given up on walking right ever again. I cant afford hyperbaric chamber therapy. or Stem cell.. I am just at the point to wear i don’t care if i walk right again. just stop the pain. Was always terrified of having to have any kind of surgery. but even if it was brain surgery I am willing to if it stopped the pain. But then I read more of how MS being a demyelinating disease, That brain surgery wouldnt even help. I need the nerve zapped with a lazer. Good luck to all of you, specially those able to act like MS ain’t nothing to them.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Meagan Heidelberg moderator
    3 years ago

    Hi Nick,
    Thank you so much for sharing your story with us and our community. It sounds like you’re going through a lot and I commend you on sharing it with us. We are listening! I’m going to share some articles with you from our page that you may find helpful. Also, I’d like to warmly welcome you, if you haven’t been yet, to our Facebook page – where so many of our community members find it helpful in addition to our website. Here is some information regarding clinical trials; One of our authors, Meghan, has a great article on HER “Stages of MS” – as every MS’er is different/feels different.
    We have a lot of information on resources that you may find helpful here as well; Please feel free to explore our website as we have quite a collection of articles as well as stories from our members.
    Please know that you are certainly not alone on your journey. We truly appreciate you reaching out to us, and our wonderful community. I hope that you found these articles helpful.

    We’re thinking of you,
    Meagan, Team Member

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