Recently Diagnosed with PPMS

I was recently diagnosed with PPMS, to which I am not yet excepting well.

When I inform friends, family, co-workers of this bad news, they all feel compelled to tell me the story of someone they know (or knew) who was stricken with this. Some tell me about how well this person has coped with this, others have feel it is their responsibility to tell me about the terrible life their person has or had.

The blunt truth is that I really don’t give a sh*t about any of it. I just want all of them to stay the f**k away from me with their good intentions.

I also admit that the thought of ending my existence seldom leaves my mind.

It makes me sad that I am polluting this forum with my issues. I am truly sorry for that.

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Comments

View Comments (11)
  • MelodyBeasley
    4 months ago

    Hi Todd, as you can tell, my name is Melody and I was diagnosed in Dec. with primary progressive. I find it so hard to understand all this stuff that goes along with this disease. Its also hard to find info on the primary side. I find tons of stories about the relapsing side. Im also on the Ocrevus infusions, in Feb. will be my 2nd full dose. Ive also had a stroke and have non convulsive seizures. Anyway, thats my story, Im 53 years old. I hope you are doing well, and thank you for reading.

  • ShelbyComito moderator
    4 months ago

    Hi @melodybeasley, thank you for your comment. We are grateful you reached out and appreciate you sharing a bit of your story with us. I’m so sorry to hear all that you’re going through right now. Navigating life with MS is no easy task, and I imagine most people here can relate in finding it so difficult to understand. In case you didn’t see it, here is a special section on our site dedicated to PPMS: https://multiplesclerosis.net/navigating-life-with-ppms/ I hope you find some helpful articles there. We are here for you as you go through this and please feel free to reach out anytime. Warmest wishes, Shelby, MultipleSclerosis.net Team Member

  • Lilred59
    4 months ago

    Yeah, they have a few friends with the same thing. PPMS is in the 15 percentile of those who have MS. Then you have your manager that doesn’t have a clue about what MS is. And to beat it all, doesn’t want to have it explained.

  • dgross23
    5 months ago

    I can totally relate to your mindset when it comes to this topic.

  • mtoddh author
    8 months ago

    I really wish I could get medical marijuana. That might help my mood swings and depression.
    But I don’t know how to get it..

  • Carol
    8 months ago

    Hi, hasn’t your neurologist talked to you about Ocrevus infusions? This came out just for the PPMS. I gather this is the first time that PPMS have been able to have a drug therapy treatment plan. Please talk to your neurologist and see if you can get started on those infusions.

  • mtoddh author
    8 months ago

    Yes, he has. I’ve now had (2) half doses, which went well. The next will be a full dose.

  • Sycoraxepp
    10 months ago

    I’m not feeling polluted by your post. I came here hoping for, well I’m not sure, perhaps something to cling to I suppose. You are the only post I’ve found with PPMS. I am finding information scarce, maybe outdated too. Of course you probably know treatment seems to be non-existent.
    I messaged you before but I must have broken a rule. Maybe I still am but I can not ignore another person who is hurting and grieving so.

  • mtoddh author
    10 months ago

    Hey Sycoraxepp,
    My real name is Todd.
    But, anyway I have been having VERY good results with the new drug infusion I’ve had. It is called Ocrevus and you get it via IV trice a year. I encourage you to look into this!

  • Sycoraxepp
    10 months ago

    Hiya, I’m heading for same currently and I know exactly how you feel. I have researched doing it legally since I’m in Canada but I need diagnosis first. I think it was being misdiagnosed was when I felt like the bottom fell out of part of my soul. Some days are better some I’m angry and others I feel I’m wasting tax dollars.
    I use to have a better grip on my emotions but not so much lately. I have a social worker coming to my home now but even she admits many doors are closed to me without diagnosis. It apparently doesn’t matter I have 2 other diseases.
    I fantasize of having the lower half of my body removed. Seriously.
    But you know, my humanity is still there. I still think I can make some sort of difference, I just dont know how but it’s a possibility. Someone might love me someday or I might love them. I know that is a treasured gift I’m still capable of. Maybe you too. So tell them all to F off and figure out how you will roll with this with someone you trust or yourself. I’m willing to listen so I’m sure others will too. You are in charge.

  • Kelly McNamara moderator
    11 months ago

    Hi mtoddh,

    Know you’re never polluting our site with stories like this!!! Sharing experiences like this helps others in the community to know they’re not alone in feeling this way. I can’t imagine everything you’re going through but please just know there’s always someone who’s willing to listen and to hear you. If you ever feel like you need help, don’t hesitate to contact the National Suicide Prevention Hotline at 1-800-273-8255 or online at http://www.suicidepreventionlifeline.org/ or any local options such as medical professionals, counselors, or support groups. Also, the Multiple Sclerosis Association of America (MSAA) (https://mymsaa.org/msaa-help/helpline-chat/) can be a great resource for the MS community.

    We’re all thinking of you. Sometimes online support comes a little easier, and the community’s here whenever you need.

    Take care,

    Kelly, MultipleSclerosis.net Team Member

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