Hello from Berlin, Germany.

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Hello from Berlin, Germany.

Postby jnluk » Tue Sep 25, 2007 5:42 am

Hi alls, my name is Jane AB, I live in Berlin, germany, as a housewife. I am 35 yrs with one son. my husband is a pastor. I was born in Indonesia. I got news I have MS in November 2003.. 6months before I got married. while before I dont have idea about MS. not details.. its just my leg feeling is strange.. the left one is sooo hot while it was winter. and the right one feel ok. doctor said I have to be punctured to get the liquid from my brain. I scared. and I ran away. Then at 2004 I gave birth to my one and only son. the next 6 months MS attack came.

the funny and fact thing was I am just an asian..I came to Berlin in 1999. how come i got MS? My parental family there is nobody has MS. :(

doctor said I got inflammation.. while all my family was praying together to God to heal me. tears and loaded..i felt more stressed. then after bein in hospital for 11 days.. got the med .there is another checked process.. my liquor and cell blood transported to Bern in Swiss to check if the MS is true or not.. another 3 weeks result came.. saying NEGATIVE!!.. i was soooo happy..cheered greateful..then i went back to indonesia for good in 2005. while in indonesia things different came back.. i cant write properly..

my husband has duty to came back to Berlin to be a Pastor again. in Berlin.. the attack is so worst.. i have double vision, i cant open the bottle myself.. the AQUA bottle .. i cant wear my own clothings.. i feel frustrated. i feel depressed.

so that was the long story of mine. the doctor was so nice as he knew I dont want to be in injection copaxone and so on.. he offer me the study of using Teriflunomide.. Until now.. I dont know if that the best answer for me or no.. nobody could answer me .. will you help me.. the good part and the bad part doing that study please... :)

I look forward to hear from you all

THanks and God bless you
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Postby Lyon » Tue Sep 25, 2007 12:41 pm

Last edited by Lyon on Sun May 08, 2011 5:15 pm, edited 1 time in total.
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Postby TwistedHelix » Wed Sep 26, 2007 7:58 am

Hello Jane,
I'm sorry to hear you've been having such a difficult time and feeling so bad. Your doctor was kind to put you on the Teriflunomide trial because you don't like injections, but I hope he explained everything to you properly. When a new drug is being studied, not everybody gets the real drug. Some people are just given a sugar pill, (placebo ), – this is to make sure that nobody knows what they are taking during the trial which helps to keep the results more accurate and unbiased.
I think in the studies so far, patients have either received placebo, 7mg or 14mg of Teriflunomide, and people haven't had many side effects. The disease progress seems to have slowed down in terms of relapse rate and lesion load. I think some people have liked the drug so much that they have asked to carry on with it after the trial is over.
It must be very stressful for you moving first to Germany, then back to Indonesia, then back to Germany again, and stress can make MS symptoms worse. I know it's not always easy to relax, but it might help if you can!
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thank you for your replies :)

Postby jnluk » Thu Sep 27, 2007 2:09 pm

I thank you friends for replying my post.

I live in Indonesia, in a city called Bandung in West of Java Island. I live in moderate up standard of living over there. Of course I must clean my hands and body everytime I went to toilet and so on.
Once I have a cat..

I live in Christianity Families over there and now too the same.. who believe in miracle God has for me.. while I am sad and keep askin why me? what did I wrong doings in life and etc. One thing I believe that my God Jesus Christ allow everything happened to me because He has a beautiful plans.. and will bring me to be the best in life .. maybe I cant understand today.. but there is time then I will be understand and clear why that must be happened...

my Doctor here in Berlin is a Prof. Dr.Med. and he will not accept any payment from me. he only accept the payment only for the medical like the first time i have to be in infussion of cortizon steroid... in his clinic.

I have a problem in my health insurance. as after I went back to Berlin again.. i have to apply for the health insurance while then as far as I know the medical said I am Negative in my MS, so i said no disease nothing.. then when it happened again the relapse, the health insurance doesnt want to pay anything.. i paid hospital myself.. the health insurance is privat but it made me mad. as i apply it for family (3person) every month they took money but only for me they doesnt want to know the problem..

the privat health insurance means i have to pay first then they paid back.. but only my case will never get paid back.

oops seems I tell to much which I should put a blog rite? hahaha sorryyy

anyway, I thank you Bob send my best regards to your wife.. and you too TwistedHelix.. may God Jesus Christ bless you in every aspect of you and Bob's life. Amen
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