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Newly diagnosed, uneasy about drugs

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    Newly diagnosed, uneasy about drugs

    Hi guys,

    I was diagnosed about a month ago after experiencing my second relapse. The first one left the medical system confused.

    My neurologist did not really explain to me what MS was. He directed me the ms society's website and wrote a list of 4 medications on a peice of paper for me to chose from and sent me on my way.

    Needless to say I was frightened and confused. So in a month's time while still recovering from my moderate relapse and working I stumbled upon overcomingms.com and the book Multiple Sclerosis: A Self-Help Guide to Its Management. I have also found myself watching videos of Dr.John MacDougall... all 3 of these resources have given me a lot of comfort and have pointed to disease management through primarily diet, exercise and supplementation. I have started following the diet outlined by overcoming ms and have introduced a variety of supplements into my diet feeling optimistic, dare I say confident that they will help me.

    yesterday I had my follow up appointment with the neurologist and he refused to acknowledge any validity to this method. He is pushing very hard for me to get on medication ASAP. My issue is that I am struggling to get a clear idea of what I can expect from them. I have also watched videos citing studies that show some of these meds can also make progression worse.

    i don't believe everything I read or hear, but there are studies cited and thorough scientific explanations in the things I have been reading/watching. My neurologist gave me the names of 4 drugs and told me to pick for myself because they all have a similar, statistically low success rate (in his words).

    i would love to hear the perspective from others who have been managing this disease.

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    #2
    Hi,
    Glad you've found us, but sad you had to.
    I was diagnosed 4 years ago, and did many of the same thing you've done regarding research. However my research was to prove to my neuro that I didn't have MS, there was another reason for all my brain lesions (denial is a strange thing). Long story short... I was convinced.
    I'm not thrilled to hear that your doctor is saying the 4 DMTs he suggests for you have the "similar, statistically low success rate". That's depressing!! Have you gone to another doctor for another opinion? Personally I'm not sure I'd want to be treated by a doctor who has such a negative outlook.

    Anyway, you asked for personal perspectives. After finally accepting that I really do have MS (ugh) I decided that I need to do whatever I can to combat it. I'm not going to take this sitting down. For me deciding to get on a DMT is like putting on a seatbelt when I get in a car. I may never need the protection that seatbelt gives, never have a car crash, but if I do, whatever hurt I end up with will most likely be a lot less. My DMT does the same thing. If MS decides to rear it's ugly head then whatever hurt I may end up with will most likely end up with will be a lot less.

    This isn't just wishful thinking. This has been proven out by trials and actual usage over lots of years by people with MS.

    I'm not going to negate the idea of a healthier diet, exercise, or sleep pattern. Those all will help immensely too. If nothing else, they make you healthier in general, never mind the MS.

    Good luck with your decision. And with your doctor!!
    "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


      #3
      Hi Hairjunkie:

      I have three thoughts about your situation.

      1. Since you're newly diagnosed and the one neurologist you've seen hasn't been a great communicator, it could be worthwhile to see another neurologist -- hopefully one who emphasizes or specializes in MS -- and get another viewpoint. This would be not only to get confirmation of your diagnosis, but also to get a (different) explanation of MS and opinion about treatment medications.

      2. To get a better understanding of MS and to get helpful input about it, it's beneficial to speak in specifics rather than generalities.

      3. When you're a newbie, even though you do your research, if you don't have enough background in the subject matter, it's difficult to know how to interpret what you're reading and hearing and you don't have a way to judge how realistic your interpretation is. So, good thing you're asking.

      Diet, exercise and supplementation are all part of the foundation in living with MS. It's easier to have MS when you're otherwise healthy and in good shape. But they may not be enough. MS affects vegetarians and athletes and folks who otherwise are in good health, and many end up on a treatment med anyway.

      Another thing known about MS is that the worst damage seems to occur in the early years, even while the symptoms aren't so bad. MS is only "benign" until it isn't. For proponents of the MS treatment meds, the most important time to take them is in the early years. There has been research now for about 20 years that indicates that those people with MS who started on a treatment med early have better outcomes.

      So you absolutely should clean up your lifestyle. But after that, it's important to be aware that you don't get a do-over if you decide to skip a treatment med. It might not be so much what you're doing that seems to be making a difference but rather just the nature of your MS. Again, many people have felt they could hold MS at bay by diet, exercise and supplementation. And then they had a significant relapse and started a treatment med a little too late. Doctors may be skeptical of holistic treatment because they've seen that scenario before.

      Originally posted by Hairjunkie View Post
      My neurologist did not really explain to me what MS was. He directed me the ms society's website and wrote a list of 4 medications on a peice of paper for me to chose from and sent me on my way.
      That's actually not unusual, especially with a general neurologist. The pros and cons of each med really can make the decision an individual choice, so only the person choosing knows what they can and can't live with. People who are MS veterans know what those four medications are and what that effectiveness rate is. But have you researched ALL of the available MS treatment meds to know the risk/benefit ration of all of them and how those four meds fit into the picture?

      That's again where an opinion from a different neurologist might be helpful. Some doctors tend to want to start slow on the lower-effectiveness meds and some go for the heavier hitters right away. And it does make a difference how experienced the doctor is with MS.

      Originally posted by Hairjunkie View Post
      I have also watched videos citing studies that show some of these meds can also make progression worse.

      i don't believe everything I read or hear, but there are studies cited and thorough scientific explanations in the things I have been reading/watching.
      This is where specifics become very important. You may not believe everything you read or hear, but what are you basing your judgements on?

      You've watched videos... what videos? Whose videos? What are their credentials?

      Studies are cited... what studies and in what context? Not all studies are well conducted or valid. In fact, many of them aren't.

      Some of these meds can make progression worse? WHICH meds? And worse for whom and in what way? How do you know whether any of that applies to YOU?

      Thorough explanations? If you're new to MS and all of the opinions and arguments, how are you able to judge just how thorough and valid the explanations are?

      If you'd like to provide specifics, it may be easier for you to make some decisions. And it will certainly be easier for others to provide some realistiv perspective.

      Comment


        #4
        I am not shy about 'chiming in' with some advice . You can 'take it or leave it' !
        First thing that I must say is that I had a very similar experience when I was diagnosed in 2010. Is your neurologist an MS 'specialist'. If not, I suggest that you seek out a 'specialist', sooner than later. I was offered the 'list' of DMD's and I chose none because my doctor had very little I have been taking it for 2 years with no problems.
        I also read Dr. McDougall's book and I believe his ideas about diet aznd recipes are extremely valid and useful for helping MS patients. There are many diet related treatment ideas that began with Dr. Roy Swank! I hope that your journey with this disease is 'relatively' uneventful ! Good luck

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