Hi, My name is Barbara.....I was diagnosed almost 5 yrs ago at 27 just after having my second daughter.......I was is shock.....I had a thyoma so large they had to crack amy chest open.......so I had to go live my ex inlaws because I couldn't lift the baby (who was born with the sympoms and was a Vanderbilt for a month getting feeding tube )------anyway-----I felt and still do......like I died and was left with the shell of a body.....no one understood, they still don't.....My deppression is so bad that most of the time I think why coudln'd I just got cancer adn died.....something someone knew about.......I still am not coping with what is going on......I have no support or understanding. My doctors have tried to expain it to my family but.....who can understand that someone can be fine one minute and have to go to bed the nextl.
Sorry I got off on myself, but just wanted you to know tht you aren't alone.
Quote:
Originally Posted by miachris2
Hi everyone,
I'm brand new to the board and hate to have my first post be so glum, but here it goes.
In 1988 at 18 I was diagnosed with MG. In 1989 I had a thymectomy and went into almost immediate remission. In 2003 when I was pregnant with my daughter I relapsed bad, but not unbareable. My symptoms started out slow and with time in between and now I'm in full relapse ( double vision even with glasses), trouble swallowing ( lost 15 pds since Nov ), great difficulty speaking, breathing problems, etc.
For the past 3 years I've been trying to convince the doctors and insurance company that I need to redo my thymectomy because after years, the thymus begin to grow back or any fatty tissue or any tissue period left behind can cause problems in the future, like I am going through now. Even though it is considered "experimental" it seems worth a try. But because I am not on my deathbed, even though at times I truly feel like it.
I have been taking mestinon and have finally agreed to take Imuran despite the side effects. In the past I had been on IVIG for a couple of years, but it was difficult to maintain treatment because of the expense and again dealing with insurance. I have tried prednisone with devastating effects... I went into a prednisone psycosis and ended up in the hospital for 5 days.
I have replaced my primary care doctor and neuro with newer and more aggresive doctors. But right now I feel so hopeless. Without MG I am a normally a very upbeat positive person. I used to smile all the time, but because of paralysis I can't even grimace anymore. While I was pregnant my husband and I moved to a new area to buy affordable housing, but because that was around the time I started to relapse, I have not made any friends. In other words, all my friends are far away and I have no one locally. On top of that, with the economy so bad, our house is going into foreclosure.
I am no longer the wife, mother or person I used to be. I cannot sleep at night, I am sinking into a great depression. I HATE to sound like a victim, but I truy blame all of this on MG because without it and before it I could work, was active, had friends, was the best mom for my kids, etc.
Can anyone out ther please tell me how they deal with day to day living, being misunderstood by strangers because of facial paralysis, medical side effects etc.
I dont know how much longer I can hang on.
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