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 was just diagnosed with mg. Right now my condition is debilitating. They want tests on my heart b4 starting mestinon because I naturally have a very low resting heart rate and the drug could reduce it to low. This will take some time. My question is does the mestinon reduce your symptoms or merely stop progression of mg. If it gets any worse I’ll just be in bed.
Hopefully your low heart rate is due to you being a former athlete, then that won't be a life altering problem.
I'm a 59 yr old male with a heartbeat of 55 to 62 and a blood pressure of 105/60 when taken at doctor visits of which occur for me every month. I'm on mestilon 6x 60mg per day and 2000mg of cellcept, which also lowers heart beat. Last 2 months I had knee replacement surgeries and I could get my monitored overnight rate to drop to 38. Not a problem because my finger taken oxygen reads 97% at a minimum.
Tends to get some the nurses concerned at first but when the look at my skin color and listen to my lungs they get that I'm fine, just be sure to tell them.
You should be on an immune suppression drug at the same time. These drugs treat the cause.
Good luck. This group has a few excellent commentators who are far superior to me. Please share if you are antibody positive or not as treatments will vary.
since you give very little information of your mg, i would suggest that you ask your neuro, because it is the most important fact, that a neuro knoledgebale of mg, threats you, and explain where you stand with mg,
they are 4 classifications of mg, from mild to severe extreme, that will give you a better undertanding of how you should proceed.
mestidone is not a cure, it is a way to treat it. for ng they are basically 2 meds, mestidone and prednisone.
your condition debiliting, is a natural process of mg, and for your heart you should see a cardiologist to help you with you low rate.
also maybe you are taken other meds, that are contributing to this problem as cellcept and others.
if you dont have an extensive conversation with your neuro you are asking for troubles
best of luck
https://www.myaware.org/myasthenia-gravis
Take care, what I will add is that the first bit is the hardest. This is the time when the severity of your MG is assessed and the ongoing medication determined. Can be a slow process that can take a year or more. Most of us get through that, relatively unscathed, and ready for life to return to near normal.
Peter
https://www.thelancet.com/pdfs/journals/laneur/PIIS1474-4422(16)00032-6.pdf
I always appreciate your links. Thank you. They are helpful and your sense of calm helps me deal with the newness of my diagnosis and makes me think I have a good future. Just yesterday I looked at a website for MG and they showed someone in a wheelchair! I couldn’t read it. I feel like they always give worst case senario. . Hard to find Info on people who are getting on just fine with the disease.