Hi All,
I am new to this site and I bet you will not understand how (or why) I am so thrilled about this
I am 31 yr old mom of three kids ("Primrose" born in May 2003, "Bud" born in January 2006 and "Baby" born in June 2006) and I have had my MG diagnose since 1999. I live in Finland (yeah this is the place you haven't never heard before), small country in norther Europe. We have around 900 MG-ers but we/they are were silent group, who dosen't want meet others or share anything on webs discussions board
But just couple days a ago I figured out why not find somewhere a active group of MG-ers. And here you are; just a click away from me (and still on the other side of the world) !!
What can I tell more.... Let see. In 1999 I first symptoms in my eyes and then rapidly in few weeks all over. But still I used to be in very good conditition and managed in work etc. live so called normal life
But then (year was 2007) I got pregnant for the third time and started my downhill. I got so bad condition that I eat just icecream cause my facial muscles didn't work. During the pregnancy I got three IVIg which helped me great deal. And when Baby was three months old I had my first plasmatransfer and second was made last June (2009). First helped me a lot, I eat couple dayes like I haven't eat never before. I got five treatmens on round, got home on Monday and Wednesday I was back in hospital cause I was vomiting. All what we had struggle for went literally down the drain. The second plasmatransfer didn't help me that much and then I decised start Azathioprine and Imuran to support the Mestinon (I take 90mg every third hour).
I was mentioned get back to work (I have been on maternity leave for Baby and I am a nurse) this January but my doctor ordered me on sick leave for the future. Which I understand cause I can hardly walk. Image mom of three kids can't walk !! Not the mentioned everything else I can't do with / for my kids. So my MG is now really angry and not co-oping with me at all. I wish that there would be some magic button and I could make this stupid MG go away just pressing that button. Care to join me ;-)
Last years January I was also diagnosed severe depression. Which can be understand, I should be living the time of my life but insted I am watching how my life flows away. It is somehow hard, when I got the diagnose I got over it, learn to live with the limits made by MG find my place and accepted all. And then suddenly started the relaps phase what doesn't seems to end. This winter have been a nightmare, we have extra snowy winter. Since 80's we haven't had this much snow. It is very hard dress up warmly (and dress up three others), walk with heavy shoes in dunking snow up to your knees... You can image that I have been living much inside for last four months.
But that's enough of me. I have to say that I am very suprised how common is IVIg among you. Here in Finland it is given just for the pregnant. Doctors think that it is so expensive and so little studied treantment that it is waist of money ! This is something that makes me very angry, cause IVIg helped me a lot during pregnancy and I would like to try it again but docs says NO. And fatigue is among here forum a common and knowledged element of MG and my doctor says that it doesn't belong MGs diagnostic. And third thing what I found very reliefing was this womens thing, beeing extra tired couple days before and during the period cycle.
I have read nearly every topic in this site and most of the writers a very supportive and positive.
I am so glad that I found you ! I will probably stay in backstage, but continue reading and learning.
Please forgive me my spelling faulties I haven't use my english for years !
