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Getting past the shock

  • By Lovelady102613

    I was diagnosed with MS this past January after suffering a rough relapse.  I was positive and ready to take this disease by the horns.  However, two months later I am experiencing another relapse much sooner than I expected to and now the shock & scaredness is starting to sink in.  My Home Health nurse told me that when I had another relapse that there was a good chance I’d take on a more negative light… how do you get past it?

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  • By Laura Kolaczkowski

    The home health nurse should be shown the door – that is no news to give  a patient who has just begun this journey.  I am going to assume that you are on one of the disease modifying drugs?  It takes a  while for them to kick in and begin modifying your immune system and quieting the MS.   Have you talked with your doctor about this latest relapse?  Be sure you do call, if you haven’t already.

    I am so sorry to hear you are struggling with this diagnosis  – the diagnosis can be enough of a shock, but hitting a second relapse in such a short timing is frightening.  IT takes a good year or so to adjust to this news and learn to coexist some way with this disease.  Until that happens, it can be quite the roller coaster.  I hope you are better soon,  Laura

     

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  • By Lisa Emrich Moderator

    I also experienced multiple relapses during the first year of diagnosis.  My neurologist and his nurse host a monthly newly-diagnosed patient support/education group.  I remember being the ONLY one in the group at the time who had to go through the IV steroids twice in 6 months.  That was not fun.

    Like Laura says, it does take at least a year to begin to get a handle on the disease emotionally and physically.  If you haven’t started a disease-modifying drug, please do talk to your neurologist.  And then give it time to start working.  Call your doctor whenever something new or changes come up.  Don’t be afraid to ask questions.

    Also, some people may disagree with me, but I suggest that you allow yourself to fully feel the emotions which you have.  Don’t try to stuff away the fear or anger.  Acknowledging how you feel honestly can help you to get a good hold on the roller coaster.  Be patient and kind to yourself.

    Be well, Lisa

     

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  • By Lovelady102613

    Thank you both for the kind responses.  A close friend of mine is fighting another auto-immune disease and told me that it’s peaks & valleys.  What she said really does make sense to me right now.  I had a couple rough days at the beginning of my second episode, but my doctor treated it and it went away much quickly than the first rough one I experienced.  I think that made me see the peak & the light again.  I’m guessing that until I get used to adjusting to what my body can and cannot handle I will be living something like a roller coaster.  Luckily I am strong, and when I can’t be, my fiance is. 

    I am not on disease-modifying drugs yet.  My fiance and I have been trying to get pregnant and my doctor has informed me that I should not be on the drugs while trying to get pregnant or while pregnant…so we’ll be holding off on the drugs for a while.  I have worried about the rate of how my disease could progress if I do not start the drugs right away….

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  • By Cathy Chester Moderator

    Good luck to you, Lovelady.  You sound as if you are already on the road of a positive attitude, and that means everything!

    Remember that everyone with MS has it differently; no two people are alike.  We call each other snowflakes because no two people have MS the same.  If someone tells you  their experience, that may be helpful and comforting to know you are not alone,  but it won’t be exactly what you will experience.  Please keep that in mind. (Sometimes when you are newly diagnosed it can be scary to hear someone’s story and think you will have the same experience.  That is not the case.)

    I hope this helps.  Good luck with you and your fiance.  You are blessed to have such a wonderful and supportive person in your corner.  It’s an exciting time for you; focus on that!

    Keep us posted on how you are doing.  Best of everything to you.

    Cathy

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  • By Lisa

    I was just diagnosed a few weeks ago.  I’m not sure I’m in shock – but I do think I’m in total denial.  When I think about it – this diagnosis explains so much and I think I’ve been living with this condition much loner than I realize.  I’m scared and worried – I’ve fallen several times from dizziness…in public and at home.  I’ve had ongoing UT problems.  I’m fatigued…constantly.  I have a young family and need to work fulltime.  I don’t know what to expect during a relapse.  I know everyone is different, and what I may read about someone’s experience just may not be anything like what I’ll go through.  I don’t like feeling vulnerable.  I don’t like the thought of having a disease.  I’m trying to stay as positive as possible, but struggle with depression.

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