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...
I saw my neurologist on Jan 6 she told me since im not on imuran I would get weak but it will take 3 months for me to feel week. But no it's only been two weeks and I already have shortness of breath, trouble talking, lazy eye, weak legs. Im going to see her in the next hr and she said she might order me some ivig but im scared of ivig because I always react bad to it. But I have a feeling i'll end up hospitalized today :( my heart is racing and once again this will probably delay my surgery on the first. I don't know I feel like im gonna lose my mind
First.. take a breathe......
Im sorry to hear that you are having some weakness, and we all have been scared during our battle through this disease at one point, so you ar NOT ALONE.
I too had all of your same symptoms and found a fast response within a week to Prednisone. My doctor informed me that it takes a couple of months for the Imuran to kick in so I was on both. The prednisone side effects are not the best, but the point is for you to get better so you can do your daily activities... also hopefully get into suregery during your planned time.
Ask your doctor to see if there is another drug that will give you a fast response.
Im currently tapering off of prednison and will be starting IVIG at the end of January. This will be my first time.
No that we are all hear for you, and it WILL be ok. Take it one day at a time, and try to find as many solutions to the symptoms as possible.
I also would suggest you start a journal to voice some of your worries, one day you will look back on it and notice how much courage and strength you had when overcoming this current situation.
Wishing you the best in all that you do, Know that we are here for support!!!!!!
Teannalives gave good advise. I remember feeling many of the things you expressed...fear, anger, and like I was losing my mind. I've noticed in the year since I was diagnosed that it all becomes a vicious circle...the stress and worry increases mg symptoms,which increases stress and worry. i can't give you great advise on breaking this cycle, because I am still learning. It's really hard work, but I'm getting there. Some things that have helped...I see a therapist, have been taking low dose of anti anxiety meds. I journal,do yoga and took a weekly class on how to deal with stress and anxiety. Try to take a deep breath and know that we r all here for you. Also knowledge is power. Check out MGFA on the web. They have a facebook page,too. You will find that may drs. don't know a lot about mg. So we have to be our own health advocate.
Things will get better and you will come thru this!
Judith
Tomorrow will be better!
Write down any concerns or questions you have - take this along on your appointment - this way you can make sure you get the answers to ALL your questions.
Make sure you understand what everything means in terms of your health. Ask lots of questions - its your health thats at stake here.
Worry seems to make MG symptoms worse - I know its difficult not to worry, but try some deep breathing, affirmations, relaxation.
My affirmation was (and still is) "I am healthy and strong".
You will come through this - the unknown is always so scary. Blessings to you ...judieb
best wishes for peace
TJ
Be well and do what youi are comfortable with of course.