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...
Have many questionsÂ
The folks here have Myasthenia Gravis (MG) and have gone through various treatments, experiences, and are friendly and helpful.
For a new person, it is important to know that MG is treatable, most of the folks with MG do figure out a treatment that works for them and get on with their lives.
However, we tend not to be diagnosed until MG has progressed and we are often in rough condition by the time that happens, so for many of us, the initial time - months to the first year, are the worst
Unlike some other immune system diseases, when our immune system attack on the connection between nerves and muscles is relieved by treatment, our connections grow back and we can recover often to nearly normal.
Until recently there have not been medications that target exactly what is wrong with us, and so we take medicine that targets all of our immune system to slow down the production of the bad antibodies being churned out. And of course that does weaken our resistance to other problems our immune system would normally and easily fend off. So for us, we try for a balance of minimal MG problems with enough medications, but also try to keep enough immune system to function decently.
And most of us with MG are attempting to maintain the balance so we can live a good life--and the majority of us do get it figured out and tend to see MG as an annoyance rather than taking over daily life. About 15-20% have what is called refractory MG, meaning that normal treatments don't work and special ones are needed. Another 15% are in remission from MG for periods of time and living normally without meds.
A good place to start to read about MG is at https://myasthenia.org/
Tell us about your diagnosis and how you are doing.
Good Luck
Russ
In MG our muscles are OK, but the communication link from nerves to muscles is bad -- our immune system attacks it and damages and blocks it The blood test is to see if the bad antibodies show up -- and mostly they do, but there are different types of them and not all show up in the tests. So another test is the emg.
The bad connection shows up in our activities by the appearance of rapidly tiring muscles So when we do something, the first try may be almost normal but repeating the same effort and we tire rapidly The emg test test is by a tiny shock to a muscle fiber (usually something in the eye area where our symptoms often start) and with repeated shocks see how rapidly the muscle tires. If our muscle tires faster than normal people, then we are diagnosed with MG.
Are you on medicine now? Generally we get put on Mestinon (pyridostigmine) early on and if it works, we are pretty sure to have MG. It is not a medication to cure us, but rather to make the communication between nerve and muscle better (from 30 minutes after taking a pill to about 4 hours later). The longer term med is something to slow our immune system.
My own MG story -- I had been having difficulty breathing with exercise for several years, had many tests that showed nothing, and then one day started having double vision (often the first sign of MG). Then a few days later one eyelid wanted to stay shut. I went to an eye specialists who applied ice packs to my eyes for a few minutes and the eyelids opened normally for a while. "80% chance you have Myasthenia Gravis," he said and then ordered the ACHR blood test. It came back positive for MG and I tried to get a neurology appt -- couple months out.
I rapidly got worse, having trouble talking, chewing, all in a few weeks, so went to the appointment desk at Mayo Clinic -- Rochester, MN (where I am a patient) and said that I planned to sit there and wait until a neurologist could see me -- as I wanted to be near medical care because I couldn't breath, chew, and was rapidly getting worse. I probably could have gone to the emergency room instead, had I been experiencing immediate symptoms.
So I got in to see the Chief Resident, got on treatment with Mestinon, a few weeks later was in the hospital with breathing problems and only then got on serious treatment -- 6-8 Mestinon a day and prednisone. The extra Mestinon let me go home and function. In about three months on high dose prednisone I was improving and in about 5 months almost felt normal.
The first step was getting it under control rapidly. Often an infusion of blood products is used for a immediate type fix (IVIG) in an emergency.
The second and ongoing step is to figure out the right immune suppressing medication, the right dose and get this all balanced so life can return to normal. That is an ongoing balancing act for most of us, the rest of our lives. Most folks struggle for the first part as they try to get into the medical system, get treatment started and then try to figure out the longer term balance. I tell folks that the first year can be pretty bad in all of the delays and attempts to figure out the right treatment for each individual.
By the time we have MG symptoms, we are generally pretty far into MG, and so we are likely to get worse before we can get treatment working. You really have to be insistent, persistent and get your foot into the medical system faster than what these medical systems propose The emergency room is one route. Another is the progression of your symptoms - if like me it is rapid, then you need to press your family doctor to start treatment with at least a trial of mestinon as that can be the difference between functioning and not.
I was on of 15% of folks who go into remission for varying periods of time. So right now I am off meds, feeling normal, and hoping MG won't return soon.
Good Luck,
Russ
You might want to call medical universities and look under neurologist who specialize in neuromuscular diseases and tell them your situation. If they cant see you right away ask them to please share you situation with the neurolo gist and ask the doctor. They understand more and or get on their cancellation list or go to their ER.
You need treatment faster than 2 months.
My doctor spends 30 minutes plus with me and cares about me and my concerns.
Can't say that I am feeling much better overall, I am in the stage of trying to figure out how to live with this MG thing and what my med mix looks like.
I am a Vet being treated a Debakey in Houston - great care.
Our last line of attack if all else failed was to find the most experiened MG Dr. in the area, find out where he has priviledges and go into that ER and sit untill he saw me/us. Fortunately we did not have to do that but we were getting mentally prepared.
Most Neuros that we canvased were out 6 to 8+ weeks out anyway.
Lots of experience on this site.
Good luck.