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    #1

    Please don't think this is dumb???

    Hi all,

    I'm having numerous serious health issues and have been off a DMD since end of April because of such serious side effects and my body has so much more to go through. My neurologist sent me a packet in the mail with all this reading material of all these drugs. I'm petrified after my first experience being on one for 6 months and it's not even one year I was diagnosed. I really, really like him. My MS hasn't gotten any worse or better. Is it possible he could drop me as a patient because I'm just not ready yet and next latter part of the week I will have more results on other health issues. Please do share.

    Thanks in advance,
    Diamond


    Diagnosed 6-28-14
    RRMS
    Alone we can do so little; together we can do so much. ~Helen Keller~
    Tags: None
    #2
    Diamond,
    I know of a few instances where a neurologist dropped a patient because they were adamant they would never go on a DMT. That's not your situation. You have a lot going on and your neurologist should understand that. I would just be honest with them about your situation. You may also let them know that you do want to be on a medication, but haven't decided which one. That you find the choices a little overwhelming and need a bit more time.

    It's easy to get overwhelmed with just MS. When you add in other stressors you can quickly find yourself in a state of confusion or despair. Have you considered meeting with a grief counselor or someone that has experience in chronic ailments? At times, it's great to have a neutral party to bounce ideas off of.

    Please keep us in the loop, but also try to focus on the things you can control. I know it's easier said than done, but you cannot control what your neurologist does. I wish you well!!!

    Comment

      #3
      NO, it's not dumb!

      I remember a thread before where you asked for info about people's experiences with their DMDs. I'm sorry you're still feeling so scared.
      I know that, for me, I read all the warnings for my DMD & flipped. Then I really looked. The percentages of people that had those problems were actually very small. I ended up taking the plunge. Happily I am in the majority, with only very mild side effects.
      You say that you "really, really" like your neurologist, does he have a particular medication he thinks would be a good fit for you to try next? Is it time to take the plunge yourself? (you have NO clue how hard it was for me to write that - I really don't mean to tell you what to do I'm just tossing out advice, I hate that you're scared & wish I could help more)
      Hugz
      "Hope for the best and plan for the worst. That way, all your surprises will be pleasant."
      Verin Mathwin, The Wheel of Time by Robert Jordan

      Comment

        #4
        Breathe deeply. In with anger, out with love etc.
        Your neuro is not going to sack you, ( you can sack him or her) and you are allowed some time to come to terms with everything.
        If you've only been diagnosed for six months, you have time to ponder. That is the only plus side with MS. No great hurry.

        Speaking as one who was there for launch of Copaxone, maybe it would be better to take Tysabri or Lemstrada.
        Or maybe not.
        It is so hard to make these decisions.

        Comment

          #5
          Hi Diamond:

          I'm also newly diagnosed (March, 2015). Deciding on a medicine was super overwhelming. (I've now had 3 monthly Tysabri Infusions). I seem to be doing ok on it, although last month I did have a side effect. So, I am a bit nervous myself about what the 4th infusion will bring. (It's on 8/14/15).

          May I ask what the side effects you experienced were and what medicine? It might be helpful to anyone reading this/trying to provide advice what you were on and also if there are particular medications that you are considering. (Or as TinaP asked, are there any that your Neuro has recommended in particular?)

          Also, I don't know what your other health complications are, or how they may impact what medications you may be able to take. I do wish you the best of luck and encourage you to post on here. I really think that generally everyone is really supportive and not judgmental. It's helpful to get others' opinions. Also, I think that for me, sometimes posting what is going on with me is just a way of coping.

          Anyway, yes, deep breaths are good; baby steps forward. Hugs!
          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

            #6
            Hi Neighbor

            Of course that is not a dumb question! These are very hard decisions for all of us and that is why MSWORLD is so great. We can get many opinions from people who really know and it helps us to decide many things. If your neurologist dropped you then he would be doing you a favor. He could not possible be a caring dr. if he did that. I did have one dr. drop me for refusing Rebif but I had a very bad time with avonex so he really did me a favor.
            I do not know how bad your M.S. is but tysabri has been the most effective so far, with the fewest side effects but the danger of P.M.L. and Meningitis. Of course I ended up with a lot of side effects but I am hoping they will be less on the next one.
            So take your time and do not let anyone or anything rush your decision. Remember they work for you, you do not work for them.
            Hope you feel better soon
            PEACE
            Tim

            Comment

              #7
              If you live in a big city you can consult with another neurologist and tell him/ her the whole story and how you feel about DMTs. It might give you some perspective.

              Another approach would be to discuss this with your primary care provider. Hopefully, they can look at the whole picture and help you see if your body can tolerate a DMT for MS.

              If your neurologist is so terrific, he will respect your wishes and take your other health conditions into account.

              If I was your doctor I would say, 'unless your health issues require you to take prednisone or another steroid or immunosuppressive drug, go on Tysabri.' It has no side effects and is the most effective DMT at slowing MS progression. I think it's tragic to see people injecting themselves every day and end up in wheelchairs before their neuros considered Tysabri. Lemtrada is also very effective but it's new and is a major assault on your system so it probably wouldn't be appropriate if your body is vulnerable.

              I would go to your neuro and tell him what you told us. -with all these other things going on with my health I'm just not ready to take DMTs. But some people told me they like Tysabri. What do you think of that?- usually, doctors respond well when you ask for their advice.

              And your question is not a dumb one. Doctors can and do dump patients for the ficklest of reasons. But I would give this one a chance to really be YOUR doctor. And that means respecting your wishes and looking at the whole picture of your health issues.

              Comment

                #8
                Diamond,

                You've gone through a lot in the past several months, and there's a good chance it's been much more than other patients your neurologist's has. And you still have other health concerns on your plate. It's completely understandable you are apprehensive about your next DMT and I would think given your circumstances, your neuro would completely understand why. But, it is something you need to discuss with him. As obvious as it may seem to you, he can't read your mind. In his defense, he's offering what he has in his arsenal to hopefully help battle your MS. A bad relapse wouldn't do you any favors right now.

                Tough choices, and so not fair! Ultimately, it's YOUR decision and NOT your neurologist's. If he decides that's reason to no longer treat you, then that's not the kind of doctor you need or want anyway. Best of luck to you.

                (And from a teacher's perspective, no question is a dumb question )
                Kimba

                “When you change the way you look at things, the things you look at change.” ― Max Planck

                Comment

                  #9
                  Thanks!!!

                  Thanks peeps for all your comments. Once I go through the test for my stomach, liver and pancreas I will let you know the whole scoop. This past week-end I've made a list and doing all my research and as many of you said I don't have to rush. I'm not embarrassed to share this but they put me inn the phsch. ward because the depression was horrible and I repeat HORRIBLE!!!! My doc also knew I've had chronic depression since 13. That is a HUGE apprehension. I'm doing my counseling and the mix of meds they have me on are finally kicking in. I at least feel half human. That's if for now. For sure this is my safe haven when I need it as I need all of you. Bless each and everyone of you for thinking of me while you all have soo much too.

                  Much
                  Diamond


                  Diagnosed 6-28-14
                  RRMS
                  Alone we can do so little; together we can do so much. ~Helen Keller~

                  Comment

                    #10
                    I don't think you are asking 'dumb' questions! This disease has all of the medical world stumped. You are not alone. After having this disease for several years, I am going to suggest that you consult with an MS 'specialist', if you haven't done so already. You should find a DMD that you can tolerate.
                    I am on Tecfidera. I would only take an oral med, because I could not deal with the injections, mentally. If you know, for sure, that you have MS, you need to take a DMD. Good luck

                    Comment

                      #11
                      It is over-whelming.
                      I did all the tests too, and was put on Betaseron. I have been on for 2+ years. No side effects except for red welts at some injection sites (I take an injection every other day)--very sexy! LOL.

                      It's a lot of reading material. Just choose one that you think will fit your lifestyle, symptoms, etc the best.

                      Comment

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