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25- Newly Diagnosed and scared of the future

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    25- Newly Diagnosed and scared of the future

    I was diagnosed 2 months ago after having my 2nd attack... I think... The MRI showed extensive damage and my neurologist said it is likely that I have had it for a few years without realizing that it was MS. I knew that something was weird and kept going to my primary until I started having trouble seeing in my right eye.

    I have this glare in my right eye that never fully goes away and after getting bounced from dr to dr, a retina specialist sent me to a neurologist. The first visit with the neurologist, my symptoms had gone away but I still went because it took a while to get in. 2 months later my symptoms came back and then some... I couldn't walk a straight line, I kept twisting my left foot and I had double vision every morning for the first hour or two I was awake. They got me in quickly and at that point I couldn't drive so my boyfriend drove me. (He was talking marriage on the way there. The topic never came up again and he broke up with me the day I was diagnosed). The dr sent in an order for an MRI Stat and told me that he thought it was MS because my symptoms were textbook. I then went home to find out what the heck MS was...

    I couldn't hide it from work unless I wanted to get sent for drug tests on a daily basis. It was pretty obvious something was wrong. It only got worse all too fast and I was on bed rest for 2 weeks after getting the MRI back and getting diagnosed. My double vision and balance were so bad I could not walk so the dr had me do steroid infusions. When I had the lumbar puncture, the hole didn't seal itself back up. So the beginning has been fairly traumatic.

    Because of how it has been I am really scared about how much worse it will get. I am a single mom of two. I am worried about how this is going to affect everyone else. I am scared of ending up alone forever (Which should be the least important thing- but I'm 25 and it is a concern for me) and I can't get past the fears. I feel like I'm fine and come to terms with this disease and then I can't stop crying. I joined this site in the hopes that talking about it with people who truly understand will help. I have always been very optimistic and that part of me is just hiding I hope.

    Thanks for reading my novel!

    #2
    WELCOME BRIGHT EYES!!!!!!!!!!!!!!!!! it's great to have you here but I'm sorry why.

    Because of how it has been I am really scared about how much worse it will get. I am a single mom of two. I am worried about how this is going to affect everyone else. I am scared of ending up alone forever (Which should be the least important thing- but I'm 25 and it is a concern for me) and I can't get past the fears. I feel like I'm fine and come to terms with this disease and then I can't stop crying. I joined this site in the hopes that talking about it with people who truly understand will help. I have always been very optimistic and that part of me is just hiding I hope. Thanks for reading my novel! I think it is normal to have these thoughts. I can't tell you what will happen in the future. As far as joining this site, I know it was the best thing I ever did. It is so nice to be able to talk about the things I go through that" normal" people do not. Once you get past your grieving stage, you are grieving because part of you is gone, things will begin to come back together. Some people can" wrap their head" around the fact they have MS very quickly, while others take a bit longer. People here are very understanding and supportive. If you have any questions, please ask them. Good luck
    hunterd/HuntOP/Dave
    volunteer
    MS World
    hunterd@msworld.org
    PPMS DX 2001

    "ADAPT AND OVERCOME" - MY COUSIN

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      #3
      BriteEyes,

      I'm 25 and have a 4 month old baby girl. My MS is very aggressive and I'm in a really bad relapse right now. I can't walk very well at all and can't carry my daughter anywhere. I'm so afraid I will fall with her or drop her. I've tried all the regular drugs for MS except Tysabri and nothing has worked for me so far. I wanted to write you to let you know that you will meet a wonderful guy who will love you for you and won't give your condition a second thought. There's a reason for everything and I know it's so hard to understand why things are happening sometimes. I've been there. Just hold on and your prince will come. I will definitely be praying for you.

      Comment


        #4
        Welcome to the board, and I'm sorry that it took so long for you to be diagnosed.

        I know in my heart that you aren't going to be alone forever - what happened with the guy simply showed that he wasn't strong enough to lift you - figuratively speaking. There is a man for you who will stand by your side no matter what - he just hasn't found you yet - because as you know, guys never ask for directions But he will find you in due time.

        In the meantime - I hope that you will go on a DMD to help prevent further attacks. That in itself will give you a sense of control for the future - it's kind of like whacking the head of a burglar in your home with a frying pan. He might wake up, but you stopped him from doing more damage in the meantime.
        Dx RRMS 2008/Kesimpta Feb 2023
        UNbalanced Dog Trainer - Accredited pet dog training instructor

        Comment


          #5
          thank you

          That you to everyone that replied. I'm sorry it took me so long to respond but oh the joys of an attack/relapse/exacerbation/flare up (ugh too many names for it).

          It is so weird to think that you have accepted what is going on just for a bad day to come up and smack you over the head. I am really glad I joined- it is amazing to have people to talk to and read what they are feeling and knowing that someone understands.

          I am on copaxone, does anyone else lose their appetite with that medicine? I've lost 40 pounds since I was diagnosed and the only thing that got me actually hungry are the steroids that my doctor has me taking to work past this attack.

          Comment


            #6
            [QUOTE=
            In the meantime - I hope that you will go on a DMD to help prevent further attacks. That in itself will give you a sense of control for the future - it's kind of like whacking the head of a burglar in your home with a frying pan. He might wake up, but you stopped him from doing more damage in the meantime.[/QUOTE]

            That is the funniest thing I've read in a long time... makes total sense though!

            BriteEyes, I hope your aggressive MS gets under control soon, I feel so bad for you that this nasty attack is your official "introduction" to it. You're so right about being OK one day and getting smacked in the face the next. Hopefully, those OK days last longer and those smacks in the face won't hurt so badly.

            I have had great success so far with Copax, didn't lose weight or my appetite. Maybe this is a temporary thing, it takes around 6 months for the med to start working so there's still time for that side effect to maybe subside.

            In the meantime, I hope you feel better soon, please keep us posted on how you're doing,

            Jen
            RRMS 2005, Copaxone since 2007
            "I hope to be the person my dog thinks I am."

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