Sounds like you need help right now! If your neuro is dragging his/her feet, then try and find a new one!
I had a crisis when I was that weak and had to be hospitalized b/c I couldn't breathe and it helped out a lot!
There has got to be some drug that will help you. I understand how scared and alone you are.....I know what it;s like to be afraid to go to sleep, for fear I may not wake up..............
Almost everyone who has MG has bouts of depression ( @ least that is what my GP told me)....I am on Paxil (10 mgs) daily, and that seems to have helped....
Have you had the plasma exchange? It sux, but is effective! I just don't understand why getting IV IG is so frickin hard! Our drs know we need it to stay happy and healthy!
It sounds like this stupid disease has really done a number on you......I hate being sick! DO NOT BLAME YOURSELF!!!! You are the victim! It is our stupid society and health care that is to blame! I have a friend in Australia who gets the same meds I get for pennies on the dollar............
Cry, scream, rant, rave, do it all! There is nothing wrong with a little break down now and then! SAdly, we have all been there!
Don't worry about what others think! You are sick! They can all go to h$$$! You do not OWE anyone an explanation! I've thought about getting a shirt that says "I've had a thymectomy, what's your excuse?", but my hubby and son nixed that idea.....
Is there some sort of governent aid you can get? Social security disability? It sounds like you need a lawyer to fight for you!
Where do you live? I know how hard it is to have your home foreclosed on. I went through the same thing years ago and it was heartbreaking but right now you need to focus on YOU and getting well.........
I had no idea that prednisone could cause psychosis.........that is scary!!!!
If you need to talk ANYTIME I am here for you! My email is erinhermes@hotmail - feel free to contact me anytime!
I have blown up since I've been on the roids' and people who haven't seen me in a while always tell me "You've gained weight" - no, really? I tell them that I have an incurable disease and the roids are the thing that keeps me alive, so I'll take being 20 lbs heavier any day of the week. People can just be so insensitive. No one really knows that much about MG anyway, they just give me a blank stare when I tell them the name of my disease.......As for the eye thing, I've noticed when I ice my eyes down they almost look normal......my neuro suggested that one!
When are that weak, try and take it easy. I know that sounds ridiculous especially with young children, but there really isnt any other choice. Can your mom/family come down and help? Can you send your kids to them if they can't come down? I feel guilty all the time b/c I am no longer the mom/wife I used to be, but there isn't much I can do about it right now and stress will only make me feel worse!!!!!!
Sorry for going on and on, but my heart just broke when I read your story.....you are so young!!!!
Please email me anytime for any reason........I don't mind venting @ all!!!!
Erin
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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