Back to all discussions

Partner just diagnosed with MS... what should I expect and what should I know?

Hi all, up until a few hours ago I didn't even know what MS was until my boyfriend of 1 year got diagnosed suddenly. We’re both in bits, but I absolutely love this man, and I’ve said that I want to be with him every step of the way no matter how hard it is. What should I expect, and what should I know? Any advice at all is appreciated, I want to know anything and everything I possibly can! It's an awful lot to take in, and I can't stop panicking!

  1. Hi Sammy94,

    I am going to provide some links for you with information that hopefully can help with any questions both of you are sure to have!

    First of all please know that neither of you are alone in this and we are so glad you reached out to this community.

    Unfortunately, a new diagnosis for both the patient and caregiver can be both scary and confusing. Arm yourselves with as much knowledge and information as you can, AND
    never be shy in contacting your health care provider(s) with concerns or questions you might have!

    https://mymsaa.org/ms-information/newly-diagnosed/

    https://multiplesclerosis.net/living-with-ms/advice-for-newly-diagnosed/

    https://multiplesclerosis.net/living-with-ms/a-letter-for-the-newly-diagnosed/

    https://www.nationalmssociety.org/Symptoms-Diagnosis/Newly-Diagnosed

    A LOT of information I know, but try to digest things slowly and look through them at a comfortable pace for yourselves, and as I mentioned, it's so important to have a doctor who is knowledgeable in m.s. and can walk with you both through the uncertainties.

    Know that we're standing with you and are here if you have further questions, comments, or ever have a day that you just need to vent!
    Please keep us posted, thinking of you! Janus

    1. , In addition to Janus's excellent advice and reputable, helpful info links, I want you both to know that you'll be all right with this.

      Fear of the unknown is among the first reactions to an MS diagnosis. Know that the fear will subside after you live with the disease for a while. It takes a lifetime to learn all the tools that help us cope with each passing day, month, and year.

      There's oodles of information on the internet about the disease and its treatments. Just as important (and maybe most important) is symptom management. From medications to physical therapy and home exercise, you can learn about them from your doctors, online MS communities, and MS organizations' webpages.

      While it's healthy to self-isolate during these times with COVID-19, self-isolation due to a chronic illness like MS is the worst thing we can do.

      So please reach out to us about anything at all! We care and we're here to help. Best, Kim moderator

      1. What a thoughtful girlfriend you are! There are not too many people who would hang in there after a loved one is diagnosed. I know from personal experience. My own family doesn't
        want to talk about M/S. I keep everything to myself when I am around my family. So I say to you "give yourself a HUGE pat on the back" for being a wonderful human-being!

        1. , first give yourself, as has already been said, a massive pat on the back followed by giving your boyfriend a pat on the back as well. When he asks why tell him how amazing he is for NOT being diagnosed with MS until now. I bet there were signs before now. You can also give him props for finding you. Think about it, you've already said it, you're sticking with him and then try to never mention this again. You've been provided with great information already but what helped me the most was not being treated different. Look, us with MS know we are "different" and will figure it out in time. Try not to attempt to "fix" his issue because, well, you can't but you can be there. You asked what you can do. Well behind the scenes a lot but he might not need you to do more, at first, than to be there after telling him your sticking, period. In time, suggest he get into a positive MS support group but on his own time. You can go with him to support him but he will need to go in his own time. What I remember after I was diagnosed was how much I missed the way it was until I realized it remained how it was with a couple of new things that I only could see. Let him know the chances of his worst fears coming true immediately are slim and to enjoy the ride that is life.

          or create an account to reply.