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Venting: I realize everyone is entitled to their own opinion

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    Venting: I realize everyone is entitled to their own opinion

    I realize everyone is entitled to their own opinion and I do believe that everyone should do what they feel is right for them related to their treatment... (I really do, despite what I am going to say)...

    But, that being said, I find it really upsetting when people diagnosed with RRMS say that they are not taking a medication because they feel good and do not have any problems. I feel like the fact that they "feel good" and are not having problems is all the more argument for why they should be on medicine. (To keep MS from progressing)...

    I know that people have different reasons for not taking med. I met one guy who has had severe allergic reactions to just about any medication he's ever taken. I can understand not being on a DMT if that is your situation. I can understand not being on med if due to other health issues or other med interactions. I can understand "giving up" on med if you've tried everything under the sun and nothing works. I can even understand someone who is just totally anti-medication and doesn't want to put "chemicals" in their body.

    But to not take a DMT (medication) from the get-go on the reasoning that you feel good, is a little upsetting to me.

    It's not really my business. I do realize that. I just had to vent.
    RRMS Dx: 3/23/15
    (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
    Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

    #2
    Hello Teekybird,

    I have never used any of the DMDs. At the time of my diagnosis (1985) there were no medications for the treatment of MS. The first treatment for MS was available to the general MS population in 1993 (Betaseron)....by lottery numbers.

    I had a very high lottery number. When my lottery number came up I was notified by my Neurologist. It was decided (discussion with Neurologist) that I would wait for a while. Well, my wait turned into my life with MS

    Through the years it's been a personal preference to not use a DMD. Unlike the answers of those who "feel good and have no problems" mine is simply a lack of confidence and belief that these treatments work as well as what we are told.

    Those on DMDs are quite happy when their MRIs are either unchanged or improved from the last one thinking the DMD is working. MRIs can be unchanged or improved for those not taking a DMD.

    Progression can happen on or off the DMDs as can exacerbations (relapse, attack, flare-up). None of us have any guarantees

    We each are trying to live our lives to the best of our abilities with a disease that sucks big goose eggs.

    I am 30 years diagnosed with symptoms that go back to childhood. I have never regretted my decision on the DMDs.

    I do not expect or want someone to make the choice I have but I would like to see and hear more acceptance of those who choose not to use the MS treatments. Remember: just because someone doesn't use a DMD doesn't mean they will be worse off than a person who does use a DMD

    Take care Teekybird
    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

    Comment


      #3
      Thanks...

      Snoopy,

      Thanks for your reply and for representing "the other side." I really do believe it is everyone's own personal choice whether to be on a DMT, or what other alternative measures they may want to use in treatment. In writing my "venting" post, I was aware that I was being a bit hypocritical of that belief, but I was just feeling frustrated and needed to "get out what I was feeling."

      In your case, I also understand your reasoning. It is also wonderful that you have remained low on the EDSS and progression. Hugs. I hope that my post did not upset you. Also, I think it is good that you presented a "counter-point" for the sake of the posting.

      Thanks!
      RRMS Dx: 3/23/15
      (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
      Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

      Comment


        #4
        I am happy to see that someone is opening up a dialog that has a strong measure of rational reasoning. Everyone has the ability to make the DMD decision for themselves.
        I am PPMS and when I was diagnosed, 2009, I wasn't as disabled as I am today. I was offered several of the DMD's but I couldn't get myself to inject, every day! And there isn't any 'approved' drugs for PPMS. But, after I found an MS 'specialist' in my local area, I feel confident that this doctor has suggested that I use Tecfidera. I have been on Tec for about 1 year. I don't believe that it has any effect on me. I will stay on it, since there is no harm and no other choice of meds for PPMS.
        Everyone makes their choices. This is the one I am choosing. Good luck
        By the way, the 'cure' is on the way, very soon I hear. lol
        And

        Comment


          #5
          Hi Teekybird,

          I hope that my post did not upset you.
          Nope, not at all Everyone has their opinions about taking or not taking a DMD When I became a member of MSWorld oh so many years ago, I ran into a lot of negative comments and remarks directed at myself and others not using a DMD. Things have changed since those early years on here

          Take care
          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

          Comment


            #6
            It's a good thing

            I think this thread was a great one Teekybird. It gave us an opportunity to discuss a subject that seems to be almost taboo. I know I heard views and opinions I may not have considered before this post. As long as we are respectful of one another, we are gathering information we may not have had before. And anything giving us more info or another point of view is a good thing.

            Comment


              #7
              MS is such an individualized disease. What works for one may not work for another. Each individual person must find what works for them, be it no medication or 10 medications. Maybe some day, some year, they will find a connection to beat this horrible disease.

              In the meantime, do what works for you.

              Comment


                #8
                We are all people and sometimes we are our own worst enemies , DMD weren't out when I was first found out I had MS, and as the years progressed I decided not to take them as I am on a lot of hormones and other drugs, I had my pituitary gland removed some 37 years ago, many drugs over the years have upset the delicate balance of the cocktail of drugs I have been on so I have tried to keep the "status quo" I take tysabri now and often wonder if I would be better off if I had started something earlier but I can only do whats best for me Craig

                Comment


                  #9
                  Hello dastardly and welcome to MSWorld

                  Originally posted by dastardly View Post
                  DMD weren't out when I was first found out I had MS,
                  I read on another thread you have been diagnosed for 20 years?

                  There were DMDs/DMTs available 20 years ago. Betaseron was the first DMD/DMT which became available to the general MS population in 1993.
                  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

                  Comment


                    #10
                    Hi it was 1979 when I had my pituitary gland removed due to a tumour, 1994 when I had my first episode of MS that I can remember, because of the human derived hormones I was on for the pituitary tumour the Drs thought I had (mad cow disease)creutzfeldt-jakob) after many test and an MRI I was told I have some lesions on my spinal cord and brain and that everyone with MS has but some people get them without having MS they "never" said you have MS, they didn't know what was wrong, I was not offered any treatment and I assumed there wasn't any at the time Craig

                    Comment


                      #11
                      Hi Craig,

                      after many test and an MRI I was told I have some lesions on my spinal cord and brain and that everyone with MS has but some people get them without having MS they "never" said you have MS, they didn't know what was wrong, I was not offered any treatment and I assumed there wasn't any at the time
                      That is really too bad your Drs. handled this the way they did. In 1994 you could have been put on the wait list and given a lottery number for Betaseron. The list was moving quite fast as many were declining the medication once their number came up.

                      Take care.
                      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

                      Comment

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