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'm new to this Myasthenia Gravis. I started off with double vision back on 02/19/18. After a day or two I went to my eye doctor about it. He couldn't seem to find a reason for it happening. So he had me see an eye neurologist and an eye muscle specialist. I was told to go the ER the day afterwards for the eye neurologist could see me much quicker. During my visit they gave me a MRI on my brain and noticed I had a real bad sinus infection beside my left eye that push my eye up outward. I had surgery and at the same time I had blood drawn to be tested for MG. For weeks I wore a patch over my left eye to help with the double vision but it got no better. I blood test came back negative for MG. On March 28 I want in to see the eye neurologist because my left was cm from closing and I told him I was experiencing week in my right hand. Again he test me for MG and again it came back negative. But the next day April 10 I had an appointment with a neuromuscular Doctor at Emory where they did other testing (SFEMG and I think a RNS test) than blood testing. Which is when the diagnosis me with Myasthenia Gravis and put me on Pyridostigmine Bromine 60 mg 4x daily. Now I been getting weaker, can barely walk all day, I'm not eating like I use to, I'm missing days of work(I'm a server/bartender) never really miss work before I was diagnosed or put on medication. It going on 2 1/2 since I started the meds and I feel some much worse at times. I find it hard to things myself at times and live alone. But now I go to a relative home to sleep at night.
MG is different in each o us-- at the rate we get worse and how treatment works.
Like you, my problem started with eyes -- double vision, drooping eyelid and I got a diagnosis from that (my blood test was positive). I started on mestinon too, but within a few weeks from my diagnosis I was having so much trouble chewing, talking , walking and breathing that I went into the neurology unit at Mayo Clinic in MN to try to get stable. I ended up taking much more mestinon (about 6 pills per day) and was pu on prednisone. I went back home after a few days. With lots of mestinon I got by the next few months and then prednisone started helping and so after about 5 months I was feeling OK again.
Prednisone is a bothersome drug, but it helped me get MG under control.
MG is a very life-changing disease. Normally the first year is the worst as we get a treatment that works figured out.
I think the best advice I can give is to keep in touch with your neurologist and continue to let him/her know how you are doing. If they know you are getting worse or not coping, they will move into more treatment than mestinon. Mestinon is to make the symptoms better, but not to treat the underlying problem--and immune system that is putting out bad antibodies that attack our connection between nerves and muscles and stop the messages from going through.
To get through this you have to be really actively involved with your medical team -- and you should'm't wait to see what happens. If you are getting worse (or not improving) you have to be pushy and make sure the doctors know that. The reason most of us end up in the hospital is undertreatment, especially in the beginning of MG.
Good Luck
Russ