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    New Mom just diagnosed, now what

    Hi everyone. After two years of strange symptoms and many scans of my brain, I have been diagnosed with MS. My doctor said it does not seem to be an extremely progressive form and has given me a good prognosis. He wants me to start a round of IV solu-medrol and then in two weeks, I go into his office to talk about treatment options. This is a lot of information really quickly. I have about a thousand feelings right now.

    I'm worried about what this will mean for my family (I have a five month old son), I'm worried the medications will have really bad side effects, I am relieved that I wasn't just going completely insane, and I feel better knowing I can now do something to stop these symptoms from getting worse (hopefully). My doctor said he would prefer to start me on one of the oral medications. I am very naive about the types of medicine and am going to be doing some research.

    Also, I am breastfeeding. My pediatrician has said it is completely ok to take the solu-medrol while breastfeeding. Anyone out there a new mom with MS who has breastfed while on treatment?

    #2
    Hi again,
    Am feeling a bit off today so wanted to reply- but will make it brief-
    We have been talking a lot on a couple of the threads on here about what WE would do if WE were diagnosed now (me 32+yrs of ms) considering the treatments available NOW.
    The general consensus is that if we knew what we do now WE would ' go at it hard and fast with as big a stick as we could" so we didn't have to deal with the progression that has caught up with us now, as it eventually does to everyone. The efficacy of the treatment and preventing damage is most important.

    Drugs like Tysabri and Ocrevus are at the top end of this.

    This is of course your choice. Do as much research as you can.

    I had my first major attach when my first child was 3 months old and i went on to have 4 more kids.
    I am VERY glad i was lucky enough to have them be able to grow up with a Mum who could (for the most part) live a normal life. I hope your son has this luck too.
    Unfortunately i'm not sure my grandchildren will have it.

    Although Breast feeding is important and easier than mixing bottles and i'm sure you would like to continue - it may be best to focus on YOUR ongoing health at the moment for you and your son. In the grand scheme of things not breast feeding is not a major issue.

    All the best with your research and decision making and to you and your family,
    and please keep us updated,
    Caroline.

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      #3
      Hi and welcome to the Ms community ! Did you get a second opinion ? Are you seeing an MS specialist ? They are neurologists that specialize in treating MS . I'll open with a disclaimer. This board is for MS patients to reach out to other MSers. The advice given on this board is no substitute for expert advice from a licensed doctor. While I'm on that subject, let me give you my ongoing boring advice . Take it for what it's worth.


      Your doctor is going to give you SoluMedrol. Usually that is a course of several doses of 1000mgs. daily. That's 1 gram per day. I have had 3 days and others have had 5 days. That is 3 to 5 grams over as many days. That's a big dose. After the 3 or 5 day dose, you should expect to take several days of a lower dose to help ween you off of the steroids. Solumedrol is a steroid that doctors use to calm the inflammation that causes your symptoms. And another thought occurs to me . Did your doctor give you a CBC? What is your vitamin D level? If it isn't over 30, you need to get it there. Mine is over 50 and I started, 3 or 4 years ago, below 20! It makes a huge difference. Good luck

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        #4
        I am not a doc, so keep that in mind. I would want to do research on the breast feeding while taking the steroids. These are enormous doses- short term it can really do a number on you- insomnia, blurry vision (due to high blood sugar) and mood changes. Longer term it can affect bone strength. My doc. recommended taking an antacid to counter the digestive effects. I have learned to go as close to zero sugar as possible while on the steroids - white rice and flour count in that category. Can you pump and freeze to get your baby through the week of the steroids?

        As for ongoing treatment, I am on Ocrevus and would recommend it from the get go- Time is Brain- meaning that dilly dallying around with the less effective drugs has a cost to it. Ocrevus falls into the category of efficacious and not as scary side effect wise as other treatments.

        Please oh please give yourself permission NOT to be supermom. Sleep, nutrition, exercise and meditation are key. Your child will remember how you made him feel, try to focus on that. You´re allowed to process this diagnosis with tears, anger, frustration, etc. - that takes a while and requires readjustments when new symptoms pop up. Educate yourself and don´t depend solely on your neurologist- he/she has only so much time to read about new developments.

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          #5
          I would follow your pediatrician’s advice, unless you don’t trust your pediatrician- in which case you need a new pediatrician. A quick visit to Dr. Google pulled up some research about solu-medrol and BF: https://www.drugs.com/breastfeeding/...dnisolone.html I have no personal experience with it.

          Being diagnosed is an overwhelming time. Having a new baby is also an overwhelming time. It is 100% normal and understandable that you have a thousand feelings right now. It took me a year to wrap my head around the idea of the unpredictability of having MS. Be patient with yourself. I was diagnosed almost 7 years ago and likely had one flare 3 years before that. I’ve been incredibly lucky with my disease course, or I’ve responded really well to medication. Now I have a 6 month old son. Sometimes I worry about what the future will bring for him if my MS stops being so nice to me. I can’t control that. Right now I can live my life, enjoy what I have, and prepare as well as I can for what may come.

          You may have to decide if you want to delay disease modifying therapy (DMT) to continue breastfeeding or stop breastfeeding to start a DMT. That’s something to discuss with both your neuro and pediatrician. Yes, you have important decisions to make right now, but MS is a long game. You can change your mind. You can start a medication and then switch if the side-effects are terrible for you, or if it isn’t working as expected. I was afraid to start Tecfidera because some people have a terrible time with it. I gave it a shot and while there was an adjustment period, it turns out it works well for me.

          Having MS is a little like being a new parent in that everyone will give you advice. You’ll listen with varying degrees of interest and then in the end you’ll do what is right for you.
          dx: RRMS 8/2010; rx: Tecfidera 2/2016; Copaxone 8/2010

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