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...
Hello, a few days ago i was diagnosed with probably myasthenia gravis by a neurologist and was wondering if anybody could help me find book titles to buy or website links to explore about the condition?
Thanks.
Welcome to the group! For a starter, here's a link to the Myasthenia Gravis Foundation of America's website where you will find up-to-date information about MG.
https://myasthenia.org/
Please feel free to ask us anything at all about Myasthenia Gravis, and we will do our best to help you. Although I am not on Facebook, I have heard that there is also an active MG support group there.
MG is one of the more treatable neuromuscular diseases and with treatment many people have near normal lives. The challenge is finding the best treatment for you, which sometimes takes a while.
-Nan
Welcome to the group.
When a neurologist says "probably MG" that is pretty strong, as most of the time they think of that last in their range of diagnoses as it is so rare. I imagine you will have the blood test next and if that is not confirming, then a few other tests. MG can be hard as some folks have it and the tests show negative
I agree that starting at the myasthenia gravis foundation is a good start. I like the Mayo Clinic site https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036
as it is a good place to get acquainted with the disease
Essentially MG is our immune system making antibodies that attack the connection between nerves and muscles and blocking it. The blocking shows up as rapid fatigute when doing repetitive items, often starting in the eyes, then moving to the head and rest of the body.
The treatment is to do something to slow the production of bad antibodies -- immune system suppression. Since the medications like prednisone, cellcept, imuran etc don't target just one antibody, we have to suppress our whole immune system to produce less.
When we do that, we feel better and can be almost normal, but of course we have to have our immune system at least partially working to get past colds and infections etc. So we take enough to get rid of most of our symptoms, and then use another medicine (pyridostigmine -- brand name Mestinon) to boost our nerve=muscle communication. With the two we can be pretty normal even with the chronic problem. However it is a life long balancing act that needs to be adjusted regularly.
There are many unreliable sources of information that give bad advice on the internet, so if you stick to major medical sites like big medical systems, or the myasthenia organizations, you get accurate information. Just about any site that promises you a cure of MG is bogus, as there is not a cure; things like diet, exercise etc. are also dealt with differently by those of us with MG (at least some of the time). And of course trying to live healthy is good. But most of us require treatment and without it we tend to get worse and worse, sometimes rapidly and can end up in the hospital as our muscles quit working.
The positive side is we are treatable, and with some time and treatment we can be pretty normal and live a normal length life. And some folks go into remission for years too. it can be overwhelming to hear we have this, and we can get pretty weak before getting better, but realizing that most folks do OK with MG nowadays lets us be optimistic. However, for many of us the first few months are the worst as we are often diagnosed when we are far into the disease and it takes months sometimes for our meds to begin to work.
Good Luck
Russ
Just my opinion get a definitive diagnosis. Are you getting blood work and electromyography. . Hopefully yes. Then make a plan.
I don’t do immunosuppressive treatment and I am just fine. It’s specific to your case. Follow what the doctor recommends not people here for medication.
Myasthenia gravis foundation has a lot of utube videos you can watch in addition to their website.