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Just a question. Is there any real purpose for me to get an MRI?

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    Just a question. Is there any real purpose for me to get an MRI?

    I don't take any MS drugs and don't see a purpose for me to get an MRI

    #2
    That is probably up to you. My guess is that they do them to make sure you are not getting lesions in any dangerous areas that could interfere with autonomic functions (brainstem), or that you might have active lesions that may need to be treated with IVSM.

    Lisa
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

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      #3
      Hi Marie12,

      I don't use DMDs and never have. For me, the MRI will not change my stand on using or not using a DMD. For that reason my neuro doesn't see a need to do yearly MRIs on me to monitor lesion load.

      Lesion load can increase and/or decrease with and without medications. If I am having problems or if I would like a MRI then MRIs will be done.

      If a MRI result will change your thought on using a DMD then get MRIs to monitor lesion load. I suggest you speak to your Neurologist about this and get his opinion.
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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        #4
        Definitely that first MRI that gives you a definitive diagnosis of MS is HUGE...it's like the gold standard for MS diagnosis. Before that, diagnosing MS was a total nightmare and took a lot longer.

        As for subsequent MRIs? I wish they were crystal balls, but they aren't. Personally, I will never get another one. It is a lot of discomfort, time and money for me and in the final analysis, it is too much like reading tea leaves to be all that helpful IMHO.
        Tawanda
        ___________________________________________
        Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

        Comment


          #5
          I only get them to monitor for changes that don't manifest as identifiable progression regarding symptoms because if things drastically on either my MRI or symptoms I would consider changing my DMD. I go every 18 months.

          If I were not going to consider medications or changes I would probably not get them unless something drastically changed and again then only if I was going to be willing to try something to assist with it.
          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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            #6
            Admittedly, I am a HUGE proponent of disease modifying therapies. The vast majority of lesions are silent (asymptomatic) and therefore a poor gauge of disease progression. Symptoms can vary widely, even on an hourly basis, making symptom tracking another sub par progression indicator. MRIs are merely a snapshot/picture in time, but they may have some predictive value to MRIs.
            Providing a general insight into how MS may or may not be progressing could be important to future decisions you make. Now, if nothing on the MRI can get you to change your mind, there may not be any need.
            • If cost is one of the prohibiting factors, you might call the NMSS and MSAA, and see if they can provide the finances.
            • If you just don't believe in the value proposition, I fully understand that argument (even if I do not agree).

            Depression is quite common in MS, and we want to ensure our decision making process isn't being clouded by a poor state of mind. I would suggest you sit down with your neurologist and discuss your reasoning. You may also want to sit down with a counselor and discuss the same rationale.

            Please let us know what you decide!

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              #7
              It is entirely your choice. I am a proponent of getting them as an objective tool to measure changes in lesion location and size. I have an MRI from the first month that my neurologist suspected that I had MS. After year, I had another MRI. This gave the neurologist something to use to gauge progression. I have had a few others in the last 4 years. I expect to be in the MRI again next year.

              Comment


                #8
                To what end?

                I have been fighting this disease for 13 1/2 years now. My MRI at the outset to try to explain funky neurological happenings showed a number of lesions, but resulted in no diagnosis.

                A second "trip to the tube" 18 months later after a life-changing flare up got the doctors VERY excited about the explosion of lesions and landed me on Rebif, finally with an official name to the enemy that was after me.

                I had three more over about 2 year intervals that I was told showed less and less damage. The irony of it, though, was that I was feeling worse and worse with symptoms! A favorite "old" nurse, who has since retired, told me that she frequently saw this phenomenon. "MRIs don't come close to explaining all that is going on with this disease. It's just the only tool we have to try understand what may be happening."

                Since I was self employed and self-pay for the $$$$$ of the MRIs, I convinced the neurologist to wait once things seemed to stabilize around year seven of my "journey."

                Since then, I have been holding relatively steady with symptoms and showing little progression for about 6 years. Since the big dollar new meds are not a realistic choice for me, why go through the expense and discomfort of the MRI?

                The notion has been mentioned more strongly at my past two appointments, but I have managed to beg off and get agreement to wait.

                If things start to fast-track physically to the negative, I will submit. Until then, I've decided to wait as long as I am able!

                As they say on that car commercials: YMMV.

                Best wishes with your decision.
                "He is no fool who gives up what he cannot keep to gain that which he cannot lose." ~James Elliot

                Comment


                  #9
                  Originally posted by SNOOPY View Post
                  Lesion load can increase and/or decrease with and without medications.
                  In a nutshell, this is what I told my neurologist as my reason for bagging MRIs. He didn't counter my decision or even bat an eye. He didn't speak it, but I think he might have even agreed. I've only had one additional MRI after my initial diagnosis. Felt as if I was waiting for the Great Pumpkin or something while I was "shooting the tube". End of story for me...
                  Tawanda
                  ___________________________________________
                  Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                  Comment


                    #10
                    I did not have a MRI for diagnostic purposes. I was dx by physical exam alone. Then had a MRI to confirm the DX which it did. Now I have MRI's to gauge progression. My last one, which was about four months ago was done because I was having significant new problems. The MRI confirmed with numerous new lesion load. It was determined my MS is progressing much more rapidly that was one thought. So there is something to be said for MRI's.

                    As for DMD's that strictly a matter of personal preference. I have always been on a DMD though none of them have proved beneficial.

                    Good luck to you it whatever you choose to do.
                    Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

                    It's hard to beat a person that never gives up.
                    Babe Ruth

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                      #11
                      I agree with what Snoopy said. By the way, Snoopy, my situation with MS is the same as yours (even the same year, 1985, of diagnosis). I really hate MRIs even the "open" ones.

                      Comment


                        #12
                        Thank you all so much for your input, I really appreciate you

                        Thank you! For now, I'm hopefully not getting another unless I can locate the one near Dayton, Ohio, that is an upright sitting position. Even then, I just don't see a reason to have one, because at this point, I'm not going to take any of the MS rxs.

                        It doesn't mean I'm right in not taking the rxs, it's just my decision.

                        Thank you all so very much,
                        marie

                        Comment


                          #13
                          Originally posted by Marie12 View Post

                          It doesn't mean I'm right in not taking the rxs, it's just my decision.

                          :
                          Since it is your decision it is the right choice for you.
                          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

                          Comment


                            #14
                            I don't take DMD's and don't plan too either. I've never believed that they are a good measure as to whether the meds are working or not anyway. But, I do get MRI's as suggested by my dr. Early on, my first neuro didn't seem to focus on the lesions, but on the blood/brain barrier and brain shrinkage. He seemed to think that the MRI's were important to monitor those, and would just point out to me that the barrier was still intact and no shrinkage. I wish I could remember his explanations as to why that was so important, but that is why I continue to get them.

                            I also get them because of what could be only termed as paranoia! MS and other brain issues can mimic each other. So, I figure they'll catch something I might be thinking is MS but might be something else.

                            If I had to pay out of pocket for them, I probably would not do them.

                            Comment


                              #15
                              Ok, I decided to get an MRI & got my wedding & engagement rings cut off

                              I was getting all ready for my MRI in a couple weeks, and realized I couldn't get off my wedding and engagement rings. I've had them on for thirty nine years.

                              I've lost weight, not gained, but for some reason, that one finger was inflamed. So, I went to the fire dept, and they were able to cut them, so they are off.

                              My one finger is inflamed, my ring finger. I told my daughters, that I am never putting on any ring again. They were very nice at the station, and even helped my husband located the diamond, after I realized it was gone. He had the other ring pieces, but not the diamond.

                              Now, I have everything, and will go with my daughter to help her have a ring made from the cut rings. I thought that neither would want a ring made from it, but now they both do. Actually my oldest wants me to keep them, and have a ring or necklace made of them.

                              I told her, that I am never putting a ring on again.

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