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Just Diagnosed while living in Indonesia

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    Just Diagnosed while living in Indonesia

    I was just diagnosed on valentines day, and I am feeling completely overwhelmed and so alone in this journey.

    I am 37 years old, have three kids, 16, 3.5 and 1. I have been living in Jakarta Indonesia for the last two years for my husbands job. Two months ago I had the perfect life, feeling great then went to bed and woke up with my left side numb from my chin all the way down to my toes. I ignored it the first day but when it got worse I thought the worst, a stroke or brain tumor. Medical care here in Jakarta is lacking and i needed to get to Songapore to see a neurologist but it took two days to get clearance to fly after CAT scan to show no stroke and to get an appointment with a neuro.

    I was on my way to Singapore waiting in a line at the airport when all of the sudden I could barely stand up anymore and I had severe double and blurry vision. With my husbands support we finally made it to the doctor in Singapore. As you probably know the closer you are to the equator the less common MS is. Well I fly over the equator on the hour flight from Jakarta to Singapore which means MS is almost none existant here. After my consultation with the doctor he suspected MS and admitted me to the hospital for MRI.

    MRI results come back showing 11 lesions, 3 of which were active. Over night my world was crumbling. I was so scared, confused, overwhelmed, relieved it wasn't terminal, mad, in shock. At this point I couldn't see, couldn't move my left foot, had the ms hug, my entire left side muscles were tight and stiff, I couldn't pick up my baby, had to stop feeding him and give him a bottle and formula for the first time in his 10.5 months. I was given IV steroids for four days and then went home to Jakarta.

    Today, two months later I have recovered from this attack about 85%. I finally found a good neuro in Singapore who specializes in MS and treats actual MS patients. I am coming back to Texas this summer and will see an MS specialist while there. I have been taking rebif for four weeks now. I was finally feeling like things were going to be ok but the last two days I haven't been able to stop crying.

    I have an amazing, supportive husband and incredible friends supporting me here but I feel so alone from the MS stand point. I do not know anybody who has it, I can't talk to anyone who truly understands what I am going through. I have so many questions like what helps with the extreme fatigue? Should I stop exercising if my numbness temporarily gets worse? Will the bruising from the rebif shots ever get better? Just to name a few

    I am sorry this is so long and if you made it to the end thanks for listening. As I sit here with tears streaming down my face it does feel a little better after "talking" about it.

    #2
    It's okay MSwhileOverseas, allow the tears to come and allow yourself to experience the grieving process

    All of us have gone through the grieving process, it's quite normal when getting diagnosed with a disease like MS. It is also common to re-experience the grieving process with relapses or any changes that you may experience with this disease.

    Welcome to MSWorld.
    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

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      #3
      Welcome MSwhileOversees!!

      Snoopy is right~ at one point we have all had to go through the grieving process and if you must cry, do so! Sometimes crying gets all the sadness/darkness out and creates more space within to let some light shine. Every emotion you will experience is valid. Fear, anger, shock, sorrow...it's all OK to feel these.

      You are not alone, even though you are far away from home. You have us to turn to as we completely understand. And it's good (and fortunate!) to hear that you have support with a good neuro, family and friends. Come back often to share with us. We do care
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

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        #4
        Hello and Welcome MSwhileOverseas!

        I'm so sorry you're having to go through this. It's a life-changing experience, at the very least. I understand your fear and you need for answers.

        I suggest you surf through the forum. You'll find tons of good information ... answers ... for many of your questions, from people who are living with MS.

        The people here are good, kind and caring. We're all here to support each other, no matter where in the world we are, we're a big MS family.

        I came to this forum when my doctor mentioned MS. I've gotten much more info and caring here than in any other place.

        Like Seasha and Snoopy have said, let yourself go through the emotions you have, it's part of the process and totally normal.

        You may be far from home but were here for you! you can rant, vent, cry, ask questions or just share. Feel free to post any quest you have.

        Sending you a big cyber HUG and wishing you well!
        When I can laugh at my experiences, I own them and they don't own me!

        Comment


          #5
          MSWhileOverseas

          Hi and Welcome!..What an intersting life you are experiencing! (ummm not the MS) Great you were able to get the medical attention and dx so quickly!
          Yes, the red spots will go away but it does take some time...I've found the best is my hip, especially since my daughter gives them to me ..as far as the exercising, I think you have to experiment and see how you handle it. I go to the gym 3 days a week. I do not feel energized from the exercise, but I don't feel worse. I know it is making me stronger.

          We know and share your pain so come back often to talk, ask questions or rant.. Take care
          Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

          Comment


            #6
            Hi and welcome. Lots of great people here with tons of experience and compassion. We all understand how it impacts not just our own lives, but also the lives of our families. Feel free to ask anything and I hope you may not feel so alone now.
            Jen
            RRMS 2005, Copaxone since 2007
            "I hope to be the person my dog thinks I am."

            Comment


              #7
              I love Indonesia, have elderly family members who lived there but moved away during the Dutch colonial revolution. Lovely people and so much beauty to experience.

              I was diagnoised when I was single, with my adopted child who was by then only a toddler, after a relocation to North Carolina, hundreds of miles from my home. Not half way around the world like you, but I can understand the stress you must be feeling about having a very young family who rely on you, lonely, sick and so very far away from family who could help you and your children during this difficult time. It must be such a hardship on you and on your family to be so far away.

              You're fortunate to have a supportive spouse, that's very important and must be some confort for you.

              I hope you recover quickly from your current MS flair, exacerbation, etc. Some of us return to 'normal' with full recovery in the early stages of MS and I hope that's ture for you too.

              Comment


                #8
                Welcome to the MSW board, MSWhile Overseas, though we're sorry for the reason. You can find a lot of information and support here. Though MS is less common closer to the equator, there are MSers everywhere, and you may even find some fellow MS patients in Jakarta.

                At first I wondered about working out because the heat of exercising tended to make my symptoms feel worse. All my neurologists have said that although the symptoms might feel worse temporarily, my disease would not get worse from exercise or heat. In fact, exercise is good for MS patients.

                That said, I prefer swimming for exercise since it doesn't cause me to overheat and it is also better for my asthma. Even "water walking" back and forth across the shallow end of the pool is good exercise, if it is a bad day for me to swim laps.

                For fatigue, I use modafinil (brand name in the US is Provigil) which makes a huge difference in my life, enabling me to work full-time. Otherwise I would be disabled. Some MS patients use a similar medication called Nuvigil for fatigue, and others use Ritalin and other variations of amphetamines.

                One caution - in some conservative countries such "stimulants" are illegal, even if legally prescribed by your physician. Be sure to check the relevant laws in Singapore and Indonesia, even if you get the medication in Texas and take it back to Indonesia (or to Singapore) with you.

                Comment


                  #9
                  Thank you all so much for your support and encouragement. I think you are right about the grieving. I have been putting a strong front for the benifit of my family that is here and also for my family back home. I am grieving the life I had and scared of the life to come.

                  One thing about living here it has given me a great appreciate for how lucky I truly am. I am surrounded by extreme poverty, where the minimum wage is ~$220 a month and that is middle class. These people don't have the access to medical care like I do and some of their illness are way worse than mine. As MSW1963 said they are the most loving and grateful people. And one of the major benifits of living here is the helpers we are able to have. I don't have to do any house work and have help with kids when I need it.

                  Thank you all for your tips as well, Camsue, I tried the injection on my thigh last night and it barely left a mark. I was hesitant to try before because we wear shorts a lot here and my stomach looks like a punching bag. I didn't want my legs looking that way.

                  Onlyairfare, I will talk to my neuro about a medicine for the fatigue. As my other symptoms have gotten better and I try to return to normal life the fatigue seems to be getting worse.

                  Comment


                    #10
                    Hi

                    Hi MSwhileOverseas,

                    Did you notice my Indonesian handle? Manis (sweet). I spent a year in Jakarta during the 80s and then Bandung in the 90s, and still come and go a bit - mostly to outlying islands.

                    I understand the loneliness you feel with MS in a place where it is virtually unheard of. This board and others like Active MSers will be great for you.

                    Take care.
                    Manis

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