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 know you are probably so tired of calling your neuro and possibly facing another hospitalization but please call your neuro or take another trip to the ER. You know how quickly problems breathing can
happen or aspiration due to weak swallow. You might try sleeping fairly upright tonight if you feel you can stay home tonight. Is anyone with you?
Keep us posted to let us know you are okay.
Hugs
-sherry
PS...you are NOT complaining:-)
II agree totally with Sherry, including the call your neuro or go to the ER as hard as that may be. b.
My doctor cut me from 40mg of Prednisone last month because of some side effects.
Debbie
Keep us posted when you can.
hugs
Larissa
I am feeling a bit better today. Could be feeling the effects of the plasma exchange. So if tomorrow is another rough morning I will call my neurologist. If its a better day then we will wait. I am suppose to start my steroid taper sometime in the next two weeks so I will be sure to mention this bump in the road to my doctor just in case she wants to wait a while longer before tapering my dose... Steroid side effects are really bringing me down though and I just want to cut down whenever I can. Ill keep all of you posted on how things go.
And no school yet Debbie. I'm starting online classes for the semester but I'm going to do my best to stay involved in my school (I'm a junior in high school) but school just isn't a possibility for me right now. The early mornings and long days and work load proved too much for me last year even on good days. But the hope is that by January ill be on a lower dose of prednisone and feeling good enough to resume school full time. Best case scenario: ill be feeling positive effects from my thymectomy by then also. Keep your fingers crossed for me
Thank again everybody
Annie
~Marina
You're a junior in high school?
Wow.
You have great skill, in expressing yourself - congratulations!
This is a forum, where we all try to help one another, often by relating our personal experience with MG.
I spent much of the last year, recovering from a terrible bout of MG problems.
High-dose prednisone did not help me. And I went through round after round of various treatments, including plasmapheresis, Imuran, etc.
Sounding similar, to what you have told us - is happening with you.
My Boston Neuro believes: I have been helped tremendously - by the IV-Therapy medicine Rituxan.
(... which evidently has not seen much use, in MG patients as young as you ...)
At your next Neuro appointment, mention Rituxan to your doctor.
It doesn't hurt to ask.
- Ross
Best wishes! Keep us posted on how you're doing.
Some of us know just how scary and serious it can be. So glad you are doing better! b.