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    #16
    Hsmaldo

    I hope my new neuro is like that. I do not like going to the Dr anymore at all and will avoid it at all costs and an MRI just to tell me yes or no your disease has progressed isnít important to me. For me as long as I am feeling fine it is better to NOT know if there is silent activity.

    Leenyi


    I get that it could show no progression, but I am not looking to roll the dice and be told I have progression. I liked being in my little bubble before I didnít know I had this disease and thinking about it makes me cry all the time. I want as little to do with follow up Dr visits as much as possible. Iíll discuss it with her next time I see her , but it is my choice in the end and unless I have to do it for insurance reasons I do not plan to do one.

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      #17
      Daisy Cat,

      I totally understand not wanting to think about MS. I was just pointing out why one might be helpful.

      Back to your original question about being forced to have them yearly. I have never had one unless I thought there was a good reason to. In fact I think I have only had 5 even though I've had MS for almost 30 years.

      Take care,
      Ei

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        #18
        Originally posted by Leenyi View Post
        Daisy Cat,

        I totally understand not wanting to think about MS. I was just pointing out why one might be helpful.

        Back to your original question about being forced to have them yearly. I have never had one unless I thought there was a good reason to. In fact I think I have only had 5 even though I've had MS for almost 30 years.

        Take care,
        Ei
        That is great to know that you were never forced to get one. Hoping my neuro and insurance don;t force it. I don't see why they would - especially insurance - since insurance is only about money. But I guess I will find out next time I see her.

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          #19
          At first I had MRI's every few months. Then it was yearly. That was stretched to every several years. Now it's as needed -if I were to experience new or worsening symptoms, we would do an MRI.

          In the beginning, they do the MRI to tell if the MS medication is working. It's really not to monitor lesions, just to see if there is a new one. They want to know if the med is working, and they can tell if it isn't by monitoring the lesions. There are several med options, and the first med chosen might not be the one that works best for you.

          You can have the MRI and let your dr know that you only need to know if your med needs to be changed and that, other than that, you trust her to monitor the situation.

          I clearly remember being new to this. It does get less scary over time. For me, anyway, the fact that I'm a lot older now is helping. I have friends who've needed new hips, chemo to stay alive, surgeries (plural) on their backs, and more. So my thing is MS. Their thing is something else. It's a monster, but it's in the rear view mirror now. It's not all sunshine and roses, but no one's life is. It does get better psychologically. I promise. It doesn't happen overnight, but it does get better. Hang in there, Daisy. ❤️


          Originally posted by Daisycat View Post
          Is there anyone here who doesn't do the yearly MRIs? I am thinking about telling my Dr I want to not do any more follow up MRIs but I want to know what other people's experience with think has been.

          I know it is to look for disease activity but I would rather NOT know and as long as I feel good and am doing good I do not see the point in knowing. For me ignorance is bliss and is the only way I am surviving.

          I know she can't force me to do MRIs but I am curious if anyone else has had decided to not do these anymore?

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            #20
            Originally posted by MMMMS View Post

            I clearly remember being new to this. It does get less scary over time. For me, anyway, the fact that I'm a lot older now is helping. I have friends who've needed new hips, chemo to stay alive, surgeries (plural) on their backs, and more. So my thing is MS. Their thing is something else. It's a monster, but it's in the rear view mirror now. It's not all sunshine and roses, but no one's life is. It does get better psychologically. I promise. It doesn't happen overnight, but it does get better. Hang in there, Daisy. ❤️
            I fear this thing will holding me back unless I am able to stay busy 14/7 with work , sleep , gym , and Netflix. If I let me mind wonder its along night with Dr google. So I make sure I am exhausted and try to be asleep by 9-10. Today is different because my neighbor is having a loud party and there is no sleeping happening anytime soon.

            But as for it getting better I know I will never get to the place to where some of you guys are and I am OK with that. My number one goal right now is to make it a week without crying... But I am going to wait on that since Janurary is a bad month for me. (Anniversary of the death of my two best friends from high school)... so I'll probably need a distraction from so many things this month.- baby steps I guess...

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              #21
              Originally posted by MMMMS View Post
              I clearly remember being new to this. It does get less scary over time. For me, anyway, the fact that I'm a lot older now is helping. I have friends who've needed new hips, chemo to stay alive, surgeries (plural) on their backs, and more. So my thing is MS. Their thing is something else. It's a monster, but it's in the rear view mirror now. It's not all sunshine and roses, but no one's life is. It does get better psychologically. I promise. It doesn't happen overnight, but it does get better. Hang in there, Daisy. ❤️
              I agree 100% and believe that aging brings maturity which probably aids in acceptance? In most instances I'm not sure what is MS complaints and what is just old age. Actually both of them suck and aging is a guarantee for everyone who lives long enough.
              He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
              Anonymous

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