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    Point of follow up MRI

    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?

    #2
    In 2002-2003, prior to dx, I had 7 MRI's.

    Since then, I've had a follow-up MRI once every 5 years (2008, 2013, 2018).

    My MS specialist has never recommended an annual MRI.
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
    .

    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

    Comment


      #3
      I had two fourteen years ago when I was diagnosed. After that I couldnít see the point until this year when they offered me my first treatment. They wanted one for a baseline before I started. I donít think an MRI at this point is going to help but thatís what the Doc ordered. Maybe the info they get will help someone else down the road. In that case I guess itís all right.
      It was one agains't 2.5million toughest one we ever fought.

      Comment


        #4
        I am glad other people aren't forced to get follow up MRIs. I do not plan to get one again so hopefully my Dr doesn't make a big deal about it since for me ignorance is bliss in this case.

        She can't force me to get one... I guess I am just paranoid she will get back on her thing about wanting to switch my medicine up , but I know it is my choice in the end.

        I have awhile before this comes up... just been wondering about this lately. Also with my fear of life time limits coming back for insurance I would rather spend that money on medicine to help this not progress. Maybe in two years (hopefully two...) I will feel different.

        Comment


          #5
          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?
          Yes, to look for disease activity, which includes silent lesions - new ones that may not be causing symptoms. If you have silent activity, they may recommend medication change. Or decide to monitor to see how many new lesions and in what timeframe do they occur to guage potential aggressiveness of disease.

          So if you don't want to know and are not open to medication change, I don't see the point. You should discuss with your neuro your reasons, maybe she will have a different reason that you see value in.

          I still get them. MRIs have been stable, but since on Tysabri, extra caution.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Originally posted by pennstater View Post
            Yes, to look for disease activity, which includes silent lesions - new ones that may not be causing symptoms. If you have silent activity, they may recommend medication change. Or decide to monitor to see how many new lesions and in what timeframe do they occur to guage potential aggressiveness of disease.

            So if you don't want to know and are not open to medication change, I don't see the point. You should discuss with your neuro your reasons, maybe she will have a different reason that you see value in.

            I still get them. MRIs have been stable, but since on Tysabri, extra caution.
            I get the reason behind it , but I do not want to know if this thing is progressing. I mostly just need to know if other people have had luck with their choice to not have follow up MRIs.

            Yes it is good for some people to know if there is progression so they can change up medicine ,etc , but I will be happier in the long run not knowing if there is anything going on that I don't know about.

            I am already a mess because of this disease with there being no progression. I do not even want to think about how much of a mess I would be if I was told it was progressing faster than expected.

            I am just glad that people have had luck with not having to get follow up MRIs.

            Comment


              #7
              I have annual MRIs. I always assumed I had to have them because I am on Tysabri and it's part of the monitoring program. I figure that it's important to have as much data as possible, so I'm happy to contribute to that data collection process. I'm not sure that I would be allowed to continue Tysabri if I refused annual MRIs or the 6 month blood tests. Are there similar monitoring programs for your meds? I realize it may be different because of the Canadian Health care system where I am.

              I know one other person (in Canada) with MS who does not take any meds, and therefore chooses not to have MRIs.

              I am sure it would be different if we had to pay for them. I am so sorry that you need to worry about paying for MRIs. You mentioned life-time maximums. Have you investigated your limits for your insurance?

              Whatever your decision, it is important for you to be happy with that decision and be able to avoid the "what ifs" in the future.

              Comment


                #8
                Originally posted by Daisycat View Post
                Yes it is good for some people to know if there is progression so they can change up medicine ,etc , but I will be happier in the long run not knowing if there is anything going on that I don't know about.
                I had MRIs in 2003, 2005, 2008, and then 2018 after a recent relapse. If I had been working harder with my doctors during my follow-up in 2008 to remind them about things that happened in 2003, I might never have gotten to the point of being visually impaired in 2018. Hope that helps.
                All the best, ~G

                Comment


                  #9
                  Originally posted by pennstater View Post
                  So if you don't want to know and are not open to medication change, I don't see the point. You should discuss with your neuro your reasons, maybe she will have a different reason that you see value in.
                  I agree and would ask her preference and rationale if more than you prefer to attend. I see no point in getting this expensive diagnostic test if someone isn't interested in changing therapies and was shocked to learn here recently there are many who are relatively stable or not on a high risk medication and their neurologists still require them to come q6 months. Unless an especially complicated case I personally feel that is frivolous and wonder what the treatment guidelines actually recommend.

                  It is my understanding/experience that symptoms are often managed by our PCP so other than monitoring and offering MS med changes there really isn't much else the neurologist is doing for me. I did annual MRIs and neuro exams for 10 years now I'm down to q18 months and hope to stay that way. Dragging me in for the finger to nose or drunk walk more than once a year sounds like a waste of time and resources. My MS specialist has a 6 month waiting list and while I truly value his service I also appreciate he is realistic about exactly what he can and can't do for me.

                  Happy New Year DC.
                  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


                    #10
                    Originally posted by Daisycat View Post
                    I get the reason behind it , but I do not want to know if this thing is progressing. I mostly just need to know if other people have had luck with their choice to not have follow up MRIs.



                    I am just glad that people have had luck with not having to get follow up MRIs.
                    Is it that you just want to know if people were allowed to not have MRIs? Or are you looking for people who had luck on Copaxone with no progression? I can't tell.
                    Kathy
                    DX 01/06, currently on Tysabri

                    Comment


                      #11
                      Jules - FYI, with exception of bladder, and when depressed/anxious, my neuro does symptomatic treatment related to MS, not my PCP. Been that way thru 2 neuros and 2 PCPs.
                      Kathy
                      DX 01/06, currently on Tysabri

                      Comment


                        #12
                        One thing to consider is that your medication most likely had to go through a prior authorization to be approved.
                        With a prior auth, the doctor has to prove that the medication is necessary in order for insurance to cover it.

                        It was necessary to start a DMD but your neurologist will have to prove that the maintenance of the medication is necessary as well.
                        If you refuse an MRI, ask your neurologist if a lack of symptomatic relapses will be enough to justify continuation of the therapy to your insurance company or if they will need an MRI to have the medication approved again.

                        Also, youíre gonna do what youíre gonna do. But are you 100% okay with possibly missing progression of the disease if Copaxone isnít effective? I know you wonít try a lot of other DMDís due to side effects, so are you dead set on Copaxone being the only medication youíre willing to try? If youíre open to other DMDís, it would be a shame if you were to keep taking a medication that wasnít helpful when you could be taking something that would work better.
                        ďIím pretty and tough, like a diamond. Or beef jerky in a ball gown.Ē - Titus Andromedon

                        Comment


                          #13
                          Sarabeach

                          As of right now there are no lifetime limits but certain people want to make sure they bring them back and if that happens I will have to pick and choose what is most important. To me medication is more important than knowing if there is any progression. I would rather not know since knowing is only going to throw me into a further dark hole.

                          Pennstater Ė

                          I am looking for people who had DRs who were OK with them not having MRIS. I am not switching from Copoxane due to my own reasons.

                          IntoDust-

                          I read about all of the other medications and they all have side effects that make them not an option. From immune suppression, liver failure, to feeling like I have the flu for a week -none of them sound like fun. Also I cannot afford to take that much time off work that some of them require. We have had a lot of issues at my job with Drs being out so I have had to blow threw a lot of my vacation. I still have a nice small little cushion if needed but that isnít for me to take medicine from this disease.

                          I am OK not doing follow up MRIs because for me what is the point. If I feel OK and am doing OK we all know what it will do to me if I am told there is disease progression. I could be OK with one maybe every 2-3 years but once a year is unnecessary and a waste of my time. I would be willing to compromise but I am not willing to roll the dice every year to see

                          Also there are two of the medications that my insurance do not cover. I cannot remember which oneís they are but I didnít look into why too much. I was only using the online tool they have that lets you see how much your medicine would cost you to get. Even with co pay assistance not everything is covered for some of these drugs so I am doing what is best for me.

                          Comment


                            #14
                            I went through a point a few years ago where I told my dr I didn't want to go for my yearly MRI. I had other health issues (non-related) and was just SO done with medical things in general. He was fine with it and we skipped that year and then the next period of time, I did 18 months. I've been stable and on the same medication, so we were both fine with it, but it was a discussion between my neuro and I.

                            He moved away and I have just recently seen his partner. At that initial visit, he wanted to follow up with me in 4 months. (so I would be seeing him 3x/year). I told him I was used to seeing the his old partner every 6 months and I would like to keep it that way. If my disease was more active, I'd probably feel differently, but for now, this is what I am comfortable with and willing to do.

                            Comment


                              #15
                              Hi Daisy Cat.

                              I understand you not wanting to now that an MRI shows disease progression, but what if it shows that your med is working?

                              Last year I was second guessing my use of copaxone. Not because I was having problems but because of my fear that things weren't as good as they seemed. So I went to my Neuro appointment ready to ask to be switched to ocrevus. My neuro said I should get an MRI since I hadn't had one for several years and then decide.

                              So I got the MRI and the results were great. So we decided that since the copaxone was working for me why change. So knowing was a good thing. Copaxone works for me!

                              Best wishes.
                              Ei

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