Announcement

Collapse
No announcement yet.

Diagnosed while working abroad

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Diagnosed while working abroad

    Hello.
    I am a 24 year old American girl, but I am living in Japan right now. I've known for a long time something was wrong with me. When I was 16 I had shingles and vertigo (that I still randomly get). A year or so later I had burning pain down my left arm quite often. I later developed horrible fatigue, headaches, left eye pain, numbness on right side if face, and burning pain down both legs.

    I went to the hospital in Japan for the eye pain. CT scan showed optic neuritis.

    Everything moves so fast here...the next day I saw a neurologist and he immediately ordered an MRI and lumbar puncture. He found 5 lesions on the MRI but the puncture only showed low WBC.

    I've been hospitalized since then (1 week) while they ran so many tests I lost count. Non showed anything except when we did an enhanced MRI. It showed 2 lesions were old and 3 are new.

    Now I'm on my 3rd day IV drip and they want me to stay in the hospital to take a 15 day course of oral steroids. Then I can go home for new years but they want me back to teach me and watch me start a DMT. They want to make sure I don't have bad side effects I guess...

    They found nothing from my spine MRIs and puncture so I'm worried since they don't deal with MS much in Japan. Is it really okay to diagnose MS with just 5 brain lesions and Optic Neuritis?

    Thank you and sorry it turned out so long. I will be spending Christmas in the hospital even though I had bought airplane tickets to go be with my family. It's quite depressing.

    #2
    Seems like getting sick while abroad would be somewhat anxiety-producing for me. So glad that you received good and quick care; sounds like the Japan health care system came through for you.

    It's possible that being abroad triggered your MS symptoms. You are travelling out of the country, and getting ready for Christmas. Either one of those events, by themselves, could trigger a flare.

    I find that stress, even "good stress", when I'm enjoying myself or anticipating a happy event, triggers MS flares for me. I've learned, especially in negative or obviously stressful situations, when to say "no". But, I'm still learning how to do that when trying to avoid the "good stress" that also triggers flares for me, because I don't want to say "no" to the good things in my life. Mostly, I guess, I just need to say "no" to too much busy-ness while those good things are occurring.

    Welcome to MS Word, Astastic.
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
    .

    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

    Comment


      #3
      Originally posted by Mamabug View Post
      Seems like getting sick while abroad would be somewhat anxiety-producing for me. So glad that you received good and quick care; sounds like the Japan health care system came through for you.

      It's possible that being abroad triggered your MS symptoms. You are travelling out of the country, and getting ready for Christmas. Either one of those events, by themselves, could trigger a flare.

      I find that stress, even "good stress", when I'm enjoying myself or anticipating a happy event, triggers MS flares for me. I've learned, especially in negative or obviously stressful situations, when to say "no". But, I'm still learning how to do that when trying to avoid the "good stress" that also triggers flares for me, because I don't want to say "no" to the good things in my life. Mostly, I guess, I just need to say "no" to too much busy-ness while those good things are occurring.

      Welcome to MS Word, Astastic.
      Thank you Mamabug! I'm on my phone so sorry for the typos!

      You helped me feel better. It sucks being here. I have my amazing husband but no other friends or family so its been a little scary for me as well as them!

      I've been reading through these forums like crazy! Love MSworld! ^^

      Thank you again

      Comment


        #4
        You're welcome.

        When you get back home to the US, you'll want to find a good neurologist, preferably an MS Specialist, if you live close enough to one. Neurologists know a lot about the brain, in general, but, not always a lot about MS, specifically, since they need to know so much about a multitude of neurological disorders.

        Oh -- I just re-read your first post. You're not just visiting Japan, but actually living there. How long do you expect to be there, or is the move somewhat permanent?
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment


          #5
          Originally posted by Ashtastic View Post
          Is it really okay to diagnose MS with just 5 brain lesions and Optic Neuritis?
          Hi Ashtastic and welcome

          So sorry to learn that you are spending the holidays in the hospital, with a new diagnosis of MS. Not fun, to say the least.

          From reading your post, and reading "Diagnosing MS" on the National MS Society website, it sounds like the diagnosis of MS is quite possible, with the criteria that is needed - and all other diseases ruled out.

          http://www.nationalmssociety.org/Sym...g-MS#section-1

          Hopefully MS World will benefit you, as you go through it all.

          Wishing you all the best.
          PPMS for 26 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment


            #6
            Originally posted by Mamabug View Post
            You're welcome.

            When you get back home to the US, you'll want to find a good neurologist, preferably an MS Specialist, if you live close enough to one. Neurologists know a lot about the brain, in general, but, not always a lot about MS, specifically, since they need to know so much about a multitude of neurological disorders.

            Oh -- I just re-read your first post. You're not just visiting Japan, but actually living there. How long do you expect to be there, or is the move somewhat permanent?
            Well, I was originally planning on being here 3 years but now with all this I want to go home sooner. Within the next year. The only problem is getting my husband a US visa since he is a Japanese citizen, or I would head home sooner since my work contract is up soon.

            I'm from Oklahoma, USA and I believe there is a MS specialist there. I would like to go there if I can.

            Thank you

            Comment


              #7
              Originally posted by KoKo View Post
              Hi Ashtastic and welcome

              So sorry to learn that you are spending the holidays in the hospital, with a new diagnosis of MS. Not fun, to say the least.

              From reading your post, and reading "Diagnosing MS" on the National MS Society website, it sounds like the diagnosis of MS is quite possible, with the criteria that is needed - and all other diseases ruled out.

              http://www.nationalmssociety.org/Sym...g-MS#section-1

              Hopefully MS World will benefit you, as you go through it all.

              Wishing you all the best.
              Hello KoKo,

              Thank you very much! I was trying to find that information but with only slow internet on my phone I was having trouble. It sounds like they are right then...

              MS World is helping tons since I'm in another country and can't understand the language perfectly. I know enough to get the big picture, but when it comes to things like discussing treatments in Japanese...its a little too high level for me. So I use MSworld and other websites to help me

              Thank you and I wish you well too <3

              Comment


                #8
                Originally posted by Ashtastic View Post
                ... The only problem is getting my husband a US visa since he is a Japanese citizen, ...


                Hope that works out. I'm not sure what's involved from Japan. I'm a Canadian citizen, who married an American 31 years ago, and I've been here with a "green card" ([permanent resident) for all of that time. Actually, just last week, I finally decided to take the plunge, and, after spending six months jumping through the immigration hoops, I became a naturalized US citizen.

                Originally posted by Ashtastic View Post
                ...
                I'm from Oklahoma, USA and I believe there is a MS specialist there. I would like to go there if I can.
                Yes; there is. The OMRF Multiple Sclerosis Center of Excellence is located in Oklahoma City. https://omrf.org/patient-studies/multiple-sclerosis/

                I live in Kansas and go to the KU Med Center in Kansas City. It's about a 3 hour drive from where I live (about 30 miles north of Wichita), but it's worth it to see a specialist.
                ~ Faith
                MSWorld Volunteer -- Moderator since JUN2012
                (now a Mimibug)

                Symptoms began in JAN02
                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                .

                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                Comment


                  #9
                  Originally posted by Mamabug View Post


                  Hope that works out. I'm not sure what's involved from Japan. I'm a Canadian citizen, who married an American 31 years ago, and I've been here with a "green card" ([permanent resident) for all of that time. Actually, just last week, I finally decided to take the plunge, and, after spending six months jumping through the immigration hoops, I became a naturalized US citizen.



                  Yes; there is. The OMRF Multiple Sclerosis Center of Excellence is located in Oklahoma City. https://omrf.org/patient-studies/multiple-sclerosis/

                  I live in Kansas and go to the KU Med Center in Kansas City. It's about a 3 hour drive from where I live (about 30 miles north of Wichita), but it's worth it to see a specialist.
                  Hello again,

                  Getting a spouse visa for someone from Japan isnt much different from other countries. It's just a pain to translate everything. Also I have no idea how long it will take since their estimations always change but I heard if the US citizen is also abroad it will speed things up. Not sure how correct that is though...

                  Thank you for the info on the specialist! I will deffinatly try to go. Do you just need to be referred from your primary doctor first of a neurologist? My dad is my primary doctor so that would be easier but not sure if that would count. well I guess I'm lucky because I'll be living in OKC.

                  Thank you for all the help!!

                  Comment


                    #10
                    Originally posted by Ashtastic View Post
                    Hello again,

                    Getting a spouse visa for someone from Japan isnt much different from other countries. It's just a pain to translate everything. Also I have no idea how long it will take since their estimations always change but I heard if the US citizen is also abroad it will speed things up. Not sure how correct that is though...
                    I suspect, based on my experience with obtaining a "green card" 31 years ago, and my experience, this year, at obtaining citizenship, that it may only take 6 months or so. That's just my guess, so don't count on it, but, I think you're right. It can go fairly quickly for a spouse or your parents, I think, but, much longer for other relatives.

                    Originally posted by Ashtastic View Post
                    Thank you for the info on the specialist! I will deffinatly try to go. Do you just need to be referred from your primary doctor first of a neurologist? My dad is my primary doctor so that would be easier but not sure if that would count. well I guess I'm lucky because I'll be living in OKC.

                    Thank you for all the help!!
                    I switched, 8 years ago, from a general neurologist in Wichita, to my MS Specialist in KC. I was referred by my primary doctor. I did talk with my neurologist about the switch, and he was very supportive, as my MS exhibited somewhat a-typical symptoms and was often sort of out of control. He believed that a specialist would be a good move for me.

                    Hey -- we'll only be 3 hours apart when you move there.
                    ~ Faith
                    MSWorld Volunteer -- Moderator since JUN2012
                    (now a Mimibug)

                    Symptoms began in JAN02
                    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                    .

                    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                    Comment


                      #11
                      Originally posted by Mamabug View Post
                      I suspect, based on my experience with obtaining a "green card" 31 years ago, and my experience, this year, at obtaining citizenship, that it may only take 6 months or so. That's just my guess, so don't count on it, but, I think you're right. It can go fairly quickly for a spouse or your parents, I think, but, much longer for other relatives.


                      I switched, 8 years ago, from a general neurologist in Wichita, to my MS Specialist in KC. I was referred by my primary doctor. I did talk with my neurologist about the switch, and he was very supportive, as my MS exhibited somewhat a-typical symptoms and was often sort of out of control. He believed that a specialist would be a good move for me.

                      Hey -- we'll only be 3 hours apart when you move there.
                      Thank you for the great info and tips!
                      Yes we will be close! I can't believe it I was like "wow!" When you said you are living in Kansas! It feels nice to know there are others close by .

                      Comment


                        #12
                        Ashtastic, sounds like you are receiving the highest level of care in Japan. I hope that is of some comfort to you at such a stressful time. My impression based on google MS research, the Japanese are involved in neuroscience, and collaborate internationally as well.

                        If you have not already done so, it may be very helpful to contact the US Embassy. Circumstances being what they are for you and your husband, I imagine the consulate cutting through some 'red tape' and assisting you in every way possible.

                        Positive thoughts coming your way, hoping you & hubby settle in back home very soon and that you experience remarkable recovery.

                        Comment


                          #13
                          Hi Ashtastic!

                          I'm replying to this discussion a little late. I hope that you are out of the hospital now! I also wish you a great new year!

                          It sounds like you have gotten excellent care in Japan. So, you had a 3 day IV steroid drip, and then 15 days on oral steroids? Have they ended up starting you on a DMT? How is that going?

                          Optic neuritis was my diagnosing/presenting symptom. For me, optic neuritis was an extremely terrifying experience. I hope you are feeling better from that.

                          I found your post really interesting, because of my own past. I lived in Mexico for about 2 years. Are you teaching English in Japan? I'm just curious. When I lived in Mexico, I was not diagnosed with MS, and don't believe I had any symptoms at that point. Oddly enough, the owner of the house that I lived in while in Mexico had MS.

                          I agree with what MSW1963 said about contacting the US Embassy regarding your situation. I think it would help.

                          Last recommendation: Take care of yourself and make that your priority. If you feel you will get better support and/or care back in the U.S., take that seriously. While not the ideal situation your husband could join you once the paperwork/visa are taken care of. Or perhaps he could initially go back to the U.S. with you on a tourist visa while getting the residency visa arranged. This last recommendation isn't meant as a busybody or to be upsetting to you. It's just is really based on my own life experience at this time both in and out of the U.S.

                          It sounds like you are getting good care in Japan and if you do need to be there for another year or whatever amount, it sounds like you are in good hands. Also, this message board/msworld is a fantastic resource and comfort.

                          Best wishes.
                          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


                            #14
                            Originally posted by MSW1963 View Post
                            Ashtastic, sounds like you are receiving the highest level of care in Japan. I hope that is of some comfort to you at such a stressful time. My impression based on google MS research, the Japanese are involved in neuroscience, and collaborate internationally as well.

                            If you have not already done so, it may be very helpful to contact the US Embassy. Circumstances being what they are for you and your husband, I imagine the consulate cutting through some 'red tape' and assisting you in every way possible.

                            Positive thoughts coming your way, hoping you & hubby settle in back home very soon and that you experience remarkable recovery.
                            Thank you for your reply! Yes, they treated me very well. They were extra careful as they had me stay in the hospital for a whole month but I am finally out.

                            Thank you for the tip about contacting the US Embassy. I will try that.

                            Comment


                              #15
                              Originally posted by Teekybird View Post
                              Hi Ashtastic!

                              I'm replying to this discussion a little late. I hope that you are out of the hospital now! I also wish you a great new year!

                              It sounds like you have gotten excellent care in Japan. So, you had a 3 day IV steroid drip, and then 15 days on oral steroids? Have they ended up starting you on a DMT? How is that going?

                              Optic neuritis was my diagnosing/presenting symptom. For me, optic neuritis was an extremely terrifying experience. I hope you are feeling better from that.

                              I found your post really interesting, because of my own past. I lived in Mexico for about 2 years. Are you teaching English in Japan? I'm just curious. When I lived in Mexico, I was not diagnosed with MS, and don't believe I had any symptoms at that point. Oddly enough, the owner of the house that I lived in while in Mexico had MS.

                              I agree with what MSW1963 said about contacting the US Embassy regarding your situation. I think it would help.

                              Last recommendation: Take care of yourself and make that your priority. If you feel you will get better support and/or care back in the U.S., take that seriously. While not the ideal situation your husband could join you once the paperwork/visa are taken care of. Or perhaps he could initially go back to the U.S. with you on a tourist visa while getting the residency visa arranged. This last recommendation isn't meant as a busybody or to be upsetting to you. It's just is really based on my own life experience at this time both in and out of the U.S.

                              It sounds like you are getting good care in Japan and if you do need to be there for another year or whatever amount, it sounds like you are in good hands. Also, this message board/msworld is a fantastic resource and comfort.

                              Best wishes.
                              Hello!

                              Well I thought it was going to be three days but they ended up doing 5 days IV drip and then 20 days on oral Predonine (I'm still doing the taper). I stayed in the hospital from December 7th - January 1st. It was really long but they took great care of me. I will go back the 14th to have another enhanced MRI (that's what they call it when they use that liquid stuff) and then on the 18th I go in to have Avonex training...SCARY!

                              My Optic Neuritis wasn't that scary at first. It was just painful to move my eye, which Iv'e felt before so I think this might of been my second time but not sure. I went to the hospital for that and they found it and sent me home and set me up with a neurologist for the following Monday.

                              However, it was scary after that as my vision started having spots and lights were looking like spider webs! The scariest part was that same night the right side of my face suddenly went numb, and it was weird because it was only when I would stand up. I thought I was having a stroke. That was terrifying. The next day was Monday and I went and didn't expect it but I had so many MRIs, a lumbar puncture and was hospitalized all in the same day...it was shocking!! They also told me they were 90% sure it was MS too. It was all a blur.

                              Yeah I am teaching English in Japan, but after this January I may not continue and just help my husband with his internet business because my balance is all crazy and I have horrible fatigue. Teaching English to Japanese children is quite stressful and I think it may of played a role in causing this flare.

                              I love the Japanese health insurance (super cheap!!) so I am not excited for US health insurance. However, I feel like having my family there to support me, having more treatment options (Japan only has Avonex (no pen!) and betaseron), and being able to see an MS specialist is better. Japan is great too though so it's hard to leave.

                              Sorry that was a long reply lol ^^ Thank you for your reply and recommendations. I am taking care of myself and am eating right and starting yoga in the meantime! I also dropped down to part time teaching. My husband would rather me not work at all though.

                              Thank you

                              Comment

                              Working...
                              X