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...
Hey guy :)
i have MG I'm 16 can you help me ?
i just wanna to live normal life and to be in good health.
My neurologist counseled me to be patient, take the standard treatment (for me that was mestinon for day to day help and prednisone to try to get my immune system to stop making bad antibodies quickly and likely another immune suppressant for long term maintenance).
It took me about 4 months to get MG symptoms under control. The prednisone at high doses came down very much and those side effects lessened and I figured I would be pretty normal from then on as long as I took something to keep my immune system running slower. Dealing with the side effects of the medicines becomes the next step as the MG is controlled, and so we try to find the minimum effective dose needed to keep things normal.
I was lucky, 15% of folks go into remission in the first year or two, and now I have been med free and MG symptom free for the past 4 years. I am an old man (66 when I got it and 70 now), so one of the treatments, removing the thymus, was unavailable to me. That is often done and helps in younger folks.
The majority of folks with MG, who have an experienced neurologist get successful treatment, their condition improves greatly and they do go on to live a mostly normal life. As there are different flavors of MG, some folks have more problems, but this is a treatable disease, that can be kept under control and you can live fine.
Over the past 5 years I have been active on this forum, we have seen hundreds of folks come in, newly diagnosed, very scared, learn about MG, get treatment, and do well and disappear from here in a year or so.
The first 6 months are the worst as the treatment that works for you is figured out and the dosages refined. My neuro said to be patient, figure several months of treatment to get things under control, and then ongoing adjustments indefinitely and things level out; life is again enjoyable, and the future is bright, although not exactly what we had hoped for, certainly we can have a good life (including children).
Be patient and read everything you can from REPUTABLE sources on the Internet (Mayo, WebMD, Cleveland Clinic....) and become a knowledgeable patient who knows what is happening and works with your doctors to get the best results.
Life doesn't seem fair some of the time, but in terms of diseases my neurologist sees, she thinks MG is not nearly as bad as those like MS, Parkinsons, and others that keep advancing. MG can be halted and our neuro-muscular junctions will completely grow back and let our muscles function normally with treatment.
Good Luck. You will get your life back, and someday when you get old like me, you can counsel some youngster too ;-)
Russ
Hang in their little dude!
Frank