Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi all! It's been a while since I have been able to use my computer and I have missed you all! I've spent 8 and a half of the last 10 weeks in ICU with 2 seperate crises 10 days apart. I'm feeling pretty spent emotionally and physically. On top of all the exchanges and ventilation I have had 8 different big gun antibiotics and numerous complications and am struggling to get back onto the road to recovery.Reading all your stories gives me courage to move on and know that I'm part of a family of myasthenics. Thanks guys! This site really has been an amazing outlet.
To add to my woes, the second crisis occured away from my MG expert whilst on a holiday with my family. The new doctors that attended to me all agreed that I do not have straight forward MG but feel that my disease may be being complicated by a second disease process. My MG neuro insists that it is just severe refractory MG and that the other complications are as a result of years of illness and treatment with toxic drugs and she has refused to cooperate or advise the doctors whose care I find myself in at the moment. It's all been so upsetting. I really don't like being caught in between a whole lot of ego's!! These doctors really can be unbelievably arrogant, I mean for Pete's sake I m the one suffering here should it not be about me?
Anyway just wanted to say I'm back and hope you are all experiencing better strength and cooler days!
Ange
To add to my woes, the second crisis occured away from my MG expert whilst on a holiday with my family. The new doctors that attended to me all agreed that I do not have straight forward MG but feel that my disease may be being complicated by a second disease process. My MG neuro insists that it is just severe refractory MG and that the other complications are as a result of years of illness and treatment with toxic drugs and she has refused to cooperate or advise the doctors whose care I find myself in at the moment. It's all been so upsetting. I really don't like being caught in between a whole lot of ego's!! These doctors really can be unbelievably arrogant, I mean for Pete's sake I m the one suffering here should it not be about me?
Anyway just wanted to say I'm back and hope you are all experiencing better strength and cooler days!
Ange
Anyway, I am glad that your home and I hope you are continuing to do better and better each day.
Best wishes,
Lindie
Hugs!
Cathi
I also found doctors so puzzling and it's so hard to find a good doctor who really understands you.
I actually took my health into my own hands.
Good luck to you, I hope you will get to feel much better very soon.
Best wishes,
Ella
You WILL get well. Believe it. Take good drugs and get plenty of fresh air and support from loved ones.
Curt
Stay strong and well!
Ange
I am so sorry for what you have been thru. I hope things get better soon. I'm with catnap, your neuro needs to explain her behavior. I remember in 1999 when I was intubated this nurse was real nasty, basically insinuated that I was being a baby because I literally had to take my hand and lift my neck to be able to take my meds. If I'd have had the strength I would've slapped her. lol.
Take care of yourself and I hope you feel better soon.
(((HUGS)))
Kim
So sorry about your set back...stay strong and keep the faith, and dont stop asking questions..if you dont get the anwer you like or understand..keep asking.This lets them know your taking control of your health and that you expect the best care,and diagnosis.
Your in my prayers.
Norma