[Dreamer78]

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 !

[DesertFlower]

Welcome to the forum!

[Maxwell'sMom]

Hi, (((((welcome hugs)))))
I've always wanted to go to Finland, instead I look at the photos they have on the internet, just beautiful.
For someone who hasn't used English in a long time, you did great!
IVIG is used quite a bit here in the States for MG. I personally can't, as it's bad for a kidney patient.
I have two girls, 21, and 27. MG isn't an easy disease with which to live. I had never heard of it before my doctor told me that I had it. I was like "MY What is Wrong" I just didn't know what she was saying to me. I wish there was a magic pill too. Wouldn't that be great?
We've had a long winter here too. We still have a little snow on the ground. Today a lot of it melted. I know what you mean about wanting to do all normal things a healthy Mom does. That one is a hard one to live with, but I've learned to do other things. It was also hard to have my husband take over where I couldn't, including daily chores.
I hope you'll be able to get stablized soon with your MG. Jump in any time. The more the merrier around here.
Love Lizzie

[suev]

Hi Dreamer!! Welcome!

Glad that you found the site - it's nice to talk with folks that understand first hand. Your English is fabulous (I can't even say 'Hello, how are you?' in your language - let alone talk about MG!!)

I'm curious - Do you have a public health care system in Finland (like Britain?) or is it private like in US?

It must be very difficult to deal with MG and three little ones. My heart goes out to you.

Sue

[Shari_W]

I'm so glad you found us Dreamer! This is one place where we understand exactly what you are going through and here you will find a lot of encouragement and support.

I went through a pretty bad MG relapse about 9 months ago which caused the worst case of depression that I have ever had. I had never been that depressed in all the 16 years of dealing with MG. It felt as it I was in a dark tunnel and kept getting sucked in deeper and deeper. It was a terrible experience, but by the grace of God 9 months later I am doing much better MG wise and the depression is gone. I received a lot of encouragement here and I'm sure that we can do the same for you.



Blessings,
Shari

[rach73]

How lovely to meet you. Your English is fantastic so don't panic! I couldn't write to you in Finnish so don't apologise!

IVIG or Plasma exchange isn't common here in the UK either. Its used for mainly people who are in crisis or people who do not respond to any other medication. The reason is its very expensive and they try to limit its use to patients with cancer.

Im so sorry you are having such a tough time at the moment. I think pretty much all of us here can empathise with you regardless of the severity of our own conditions. Most of us at some time or another have had to deal with the anger, sadness or depression that engulfs you when dealing with a chronic illness that can be so misunderstood by the medical profession and family / friends.

Thank you for joining us and sharing your story.

Love
Rach

[Maxwell'sMom]

HI, after I shut down my computer, and curled up on the sofa, I was thinking about your post, and wanted to ask you something.You had said you were really tired. Many MG'ers here in the states are put on Provigil for feeling extremley tired.
I was put on it, and it has worked miracles for me. I do have Narcolepsy, but I was put on Provigil way before the diagnosis of being a narcoleptic.
Provigil has help many of my friends with MG, and has helped them stay alert, and not feel so tired.
I hope it's availible to you in Finland, it would help you so much.
again welcome.
Love
Lizzie

[Joanmarie63]

Hello Dreamer and a great big welcome to you!

I so wish they had sites like this when I was DXed, I am so happy they have them now, I have learned more from this site, than I did from any of my Dr's.. LOL

I know how hard it is to have small children and MG {been there, done that} I was DXed in 1991, went into complete remission {a miracle I know} but now out of remission {so glad children are grown now}.

I only use mestinon for my MG {due to sensitivity to other meds} Your approach to this illness, mentally is a big help. Try to always look at the bright side {there are some, really there are}

I look forward to seeing more of your posts and I hope you learn a lot here and if you learn nothing else but this... Remember we are like a family here and NO question is to silly to ask, as we all have done it and will continue to do so.

[neutro]

Hi Dreamer, welcome to this site!
I would like to add something to Lizzie's post: recently I had to be admitted to ER because I couldn't breathe due severe swallowing and respiratory problems from my MG and from a bronchitis. They put me on oxygen (10 liters/min to start down to 0 when they released me from the pneumology dpt after a week). I discovered that some weaknesses from my MG rapidely almost completely disappeared during the hospital stay and reappeared after coming home. I guess it was all due to that complementary oxygen...
Maybe you should be checked for sleep apnea?
I'm also in a relapse period and I have PLEX every ten days which keep me afloat. Here in France, PLEX and IVIGs are used only for patients in crisis or as a support treatment waiting for steroids or immunosuppressants (Immuran for ex) to kick in.
I hope you will see some improvement in the near future.
Maurice.