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...
Hello, I am new to this group. I am 46 years old, married with two young children. My symptoms appeared December 24, 2014 (shortness of breath, eyelids drooping, lopsided smile, difficulty swallowing, arm and neck weakness) but I did not get properly diagnosed until Feb 2015 when I ended up in the ER. The CT scan, which almost killed me, showed a tumor in my thymus. I stayed in the hospital 12 days for plasmapheresis and IVIG. I recovered remarkably well, no symptoms but under mestinon and prednisone for many weeks. On April 30 I had my thymoma removed via partial sternotomy. There were no complications. I only stayed overnight in the hospital. I was doing so well that I went on a road trip with my family 6 weeks after my surgery. It was an exhausting trip and my symptoms came back. I had a full crisis a few days after I got home. This was two and a half weeks ago in mid June. Again i stayed 12 days in the hospital and was almost intubated. I am back home now on meds and my neuro (wonderful doctor) thinks i am a good candidate for home IVIG. I am so much weaker this time than before I had my surgery. I wake up with droopy eyes, weak arms and neck, although I am breathing and swallowing well. I am wondering if anyone has had the same experience and when can I expect my symptoms to improve? My poor family has been through so much already. Thank you and God all of us here!
Some people do actually get worse for a short time after the surgery and it can take a long time (more than a year sometimes) to realize any improvement from it. You have to be super careful and respond quickly to your symptoms. I'm actually shocked that your neuro permitted you to travel so soon after your surgery though.
I know that it seemed like a diagnosis took forever but you are one of the lucky ones. The average time from the onset of symptoms to an actual diagnosis is 8 years. (Sad huh?) I'm happy that you got the help that you needed quickly.
One of the hardest things about this disease is the predictability or lack thereof. Having young children is going to be a large challenge but I am confident that you will be able to do it. Keep positive thoughts and take help from anyone who is willing to offer. Sadly, with MG I've learned not to have expectations. You just never know what's to come and things can change on a dime. Your best friends ore going to be organization, knowledge and preparedness but most importantly, ALWAYS have hope.
Good luck to you and please keep us posted on your status. Hugs!
Angie
Also, this may be your first summer with MG! Look at the dew point -- if it is above 70, don't go outside, don't do anything. With MG, the heat isn't as bad as the humidity, and knowing the dew point is key. You feel fantastic at a dew point of 50, you become immobile at a dew point of 70!
Good luck and tell us how you progress! ~joe
Joe, you are right, when it is humid I feel worse and just want to be in bed all the time. I am blessed that I can stay home with my children and don't have to go to work, so I can sneak in a nap here and there.
Limpnoodle, I will see my neuro this afternoon. He will discuss a monthly IVIG with me until I stabilize.
Thank you for your replies and words of encouragement! This disease sure has a steep learning curve and I am learning new things about it and about me everyday. Hugs back to you!