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...
Diagnosed with type 2 diabetes in Feb 2013 that is under control by diet & no medication. Then diagnosed with MG in Feb 2014 & started with Prednisone & Mestonin. It has been a steady decline since. Since mid June, I have been on low dose of Prednisone, Mestonin, and Cellcept.
In late August, I developed Bronchitis which lingered. I continued to spiral downwards and when my Neurologist saw me 9/9 , he started a 5 day IVIG the following day, 9/10. Following the third treatment, I went into crisis and wound up in the ER but was able to avoid a respirator.
He initially indicated that the Cellcept could take 6-9 months to become effective. On the 9/9 visit, he informed me that in my current state, it is his opinion that the Cellcept will take 1 year to become effective. Meanwhile he advised 5 day IVIG regiment every 4 weeks indefinitely
I have been positive & strong until 2 weeks ago. I am now angry, bitter, frustrated, & am in my own pity party. I have never been this defeated in my life.
Does anyone have any experience with taking nightshade vegetables from their diet?
In late August, I developed Bronchitis which lingered. I continued to spiral downwards and when my Neurologist saw me 9/9 , he started a 5 day IVIG the following day, 9/10. Following the third treatment, I went into crisis and wound up in the ER but was able to avoid a respirator.
He initially indicated that the Cellcept could take 6-9 months to become effective. On the 9/9 visit, he informed me that in my current state, it is his opinion that the Cellcept will take 1 year to become effective. Meanwhile he advised 5 day IVIG regiment every 4 weeks indefinitely
I have been positive & strong until 2 weeks ago. I am now angry, bitter, frustrated, & am in my own pity party. I have never been this defeated in my life.
Does anyone have any experience with taking nightshade vegetables from their diet?
Also
Why are you on just low dose of prednisone?
You will get better.
This disease is nasty.nasty nasty
The only thing I can say is
My life has lots of great stuff that never would have happened if I never got mg.
It is crazy but hopefully soon you will feel better.
Hang in there.....hoping for better days ahead for you.
Tamara
Yes, I'm a have glass full gal.
Hang in there, we are here for you . Hope you feel better soon.
Annette
Wellness,
I was ready to quit. And I mean ready to QUIT. Then I checked this website and began to see some possibilities. I saw that people had these terrible times but most got better.
Then I saw a DIFFERENT doctor, who then gave me the IVIG treatment. It worked like a miracle. I slowly began to recover.
I then started on the same 3 meds that you are taking, but with a higher dose of prednisone. You should talk to your neurologist about elevating your prednisone. Many have to take doses of 40 mg/day or more! Now be aware that prednisone has some possible side effects that will be a challenge to you (weight gain, hyper-emotions, etc), but once symptoms begin to diminish, your prednisone dose can be lowered. Some wind up off it altogeather.
I started to exercise and eat much better. I even 70 lbs. (gained 20 back, bummrer!!!) Eating right and getting LOTS OF SLEEP is critical. Its hard not to be stressed when you first encounter MG.
Give it some time. For most of us, symptoms get better with treatment. Stay with this website, educate yourself, and give it time.
Good luck
Gary R.
Your Neuro sounds like someone you can work with, that's a plus.
(For many of us, it was years before we found a Neuro who had experience with MG.)
What is the therapy for your diabetes? I have seen reports: there may be some side-benefit from IVIG, for diabetic neuropathy?
IVIG: I received weekly IVIG, one dose a week - for many months.
Are you tolerating the intensive once-a-month IVIG?
Hang in there, great advice in these responses - Ross
Ann - Those that are diabetic may not be able to take higher doses of prednisone because it raises the blood sugar, which in turn makes the MG worse. It's all just a big puzzle and everyone's puzzle is a mystery. lol
Angie