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...
Iwant to raise awareness about myasthenia gravis from a different perspective: officially published "MG Fact Sheets." I appreciate the information provided, but some wording needs improving, especially the part about, "people with MG can live normal or near normal lives with medication." This seems to be the main fact people remember. For the 100's of people I am in contact with in support groups, this is not the case.
For those of us who have severe Myasthenia Gravis, some "MG Fact Sheets" make life more difficult. I have a good team of doctors who understand MG and a great wife and family who know the effects MG has on me, but others do not. Here are some problems these "MG Fact Sheets" can cause.
Doctors and emergency room staff unfamiliar with MG often read these "MG Fact Sheets" and may tend to think that MG is not that serious then mis-treat or under-treat people with MG. I know of several people who have experienced this. I have had to educate doctors myself about what to and not to do about MG. YES, there are many doctors who have never treated a MG patient. Remember, MG is a rare disease.
Those who have poor family support really have a difficult time getting family members to understand how difficult their disease is when Foundations state, "people with MG can live normal or near normal lives with medication." In my MG circles, few do. It may be that I am in contact with people who have more severe cases. I have heard from many individuals on various support groups that experience the problem of lack of family support and understanding. They often say, "My family thinks I am just tired, or lazy." "Get up and do your work, you're normal." Just try to explain MG fatigue to an uncompassionate boss who has read the "MG Fact Sheets." You're fired!
Occasionally, "MG Fact Sheets" make the whole process of applying for and obtaining Social Security disability more difficult. Yes, I know that receiving disability is defined and governed by the Social Security Blue Book (Section 11.12), but that does not stop the case worker from reading a "MG Fact Sheet" and seeing "most people can lead normal to near normal lives with medication" then disapproving the application. Think it can't happen? I was disapproved the first time because I was a pastor and only worked one hour a week when I preached on Sunday--as the Social Security case worker told me! True story.
People still die from MG. I and others have lost too many FaceBook friends to MG over the past few years. This is a sobering reality that people do not want to face, but it is true. Yes, the mortality rate has drastically declined and that is great, but people still die from MG and its complications to be more specific. I would be dead now if it were not for the treatments I receive. But, I am still alive and plan to be.
People can live a normal or near normal life with medication. Well, I guess that is true if normal or near normal is redefined. Just ask someone with a severe case of Myasthenia Gravis.
--Kerry Bunn
For those of us who have severe Myasthenia Gravis, some "MG Fact Sheets" make life more difficult. I have a good team of doctors who understand MG and a great wife and family who know the effects MG has on me, but others do not. Here are some problems these "MG Fact Sheets" can cause.
Doctors and emergency room staff unfamiliar with MG often read these "MG Fact Sheets" and may tend to think that MG is not that serious then mis-treat or under-treat people with MG. I know of several people who have experienced this. I have had to educate doctors myself about what to and not to do about MG. YES, there are many doctors who have never treated a MG patient. Remember, MG is a rare disease.
Those who have poor family support really have a difficult time getting family members to understand how difficult their disease is when Foundations state, "people with MG can live normal or near normal lives with medication." In my MG circles, few do. It may be that I am in contact with people who have more severe cases. I have heard from many individuals on various support groups that experience the problem of lack of family support and understanding. They often say, "My family thinks I am just tired, or lazy." "Get up and do your work, you're normal." Just try to explain MG fatigue to an uncompassionate boss who has read the "MG Fact Sheets." You're fired!
Occasionally, "MG Fact Sheets" make the whole process of applying for and obtaining Social Security disability more difficult. Yes, I know that receiving disability is defined and governed by the Social Security Blue Book (Section 11.12), but that does not stop the case worker from reading a "MG Fact Sheet" and seeing "most people can lead normal to near normal lives with medication" then disapproving the application. Think it can't happen? I was disapproved the first time because I was a pastor and only worked one hour a week when I preached on Sunday--as the Social Security case worker told me! True story.
People still die from MG. I and others have lost too many FaceBook friends to MG over the past few years. This is a sobering reality that people do not want to face, but it is true. Yes, the mortality rate has drastically declined and that is great, but people still die from MG and its complications to be more specific. I would be dead now if it were not for the treatments I receive. But, I am still alive and plan to be.
People can live a normal or near normal life with medication. Well, I guess that is true if normal or near normal is redefined. Just ask someone with a severe case of Myasthenia Gravis.
--Kerry Bunn
When I first was diagnosed, my neurologist (from Mayo Clinic), who treated many MG patients, told me that most of her patients figured out treatments that worked and let them live reasonably normal lives, and although my first 6 months were likely to be very difficult, it would undoubtedly get better after treatment.
I am sure that she was doing this to encourage me, but she also repeated it later when I went into remission -- saying not many of her patients went into drug free remission, but most went into remission of MG symptoms with thymectomy and or ongoing medication.
Ask your neurologist next time what percent of folks they treat have a "normal life."
My neuro explained a normal live was not really normal as in before MG, but a life that meant most of the things I wanted to do, I could (unless they were heavy on the physical side -- like running).
Younger folks who get MG certainly don't have the same outlook as older people like me in terms of what MG takes away -- I don't feel the need to run 10 miles, or play basketball, etc., so normal is relative to age too.
Good Luck with the effort to change the sheets. I wonder if a compromise might be to say xx% of MG patients go into remission with treatment, xx% improve and xx% have difficulty for many years. I see most of the research papers dividing the patient results like this -- amount cured, helped significantly, helped a little and not helped type of division
I would also be curious to see more data on this subject. I also have a feeling that the majority of people in the forum are either newly diagnosed or have more serious cases. After all, this is a support group, and by definition the majority of people need support. People that have achieved remission of some sort for a period of time will not be as active here, unless they are providing support to the rest (which is wonderful BTW).
What it doesn't say is that we'll be lucky to find a doctor that knows what this disease is or how to treat it, we'll be lucky if said doctor believes that our impairments are as we describe, we'll be lucky if said doctor doesn't have his/her own biases for a given treatment and a closed mind about what is considered an option for any given patient, etc.
As Russ and others have stated, it's important to know how your neurologists defines "normal lives". My problem with that is that they should be asking US about how WE define "normal lives". As MG'ers we also have an obligation to advocate for ourselves and in doing so we need to define it for them. We can't just state that we want to get back to our pre-MG selves. Most of us know that is not likely to happen, even with medication/treatment. We have to articulate exactly what it is that we NEED to feel normal again. We've all learned a new normal since the onset of MG so we all know what it is that would get us back to a point where we can at least function. Specifically, I'd like to be able to stand up for more than 5 minutes without feeling like I'm going to fold in half... or I need to be able to work full-time and still be able to keep up with my children and to support my family. Whatever it is that you define as necessary to be satisfied with life. There should absolutely be more information on how to advocate for yourself effectively. It's not enough just to go to an MG specialist either. Some may call themselves that but have the bedside manner of a twig. It should be stated that it may be necessary to change specialists several times until you find one that truly works and advocates for what is best for the patient.
I don't think it should sound cynical, depressing or defeatist but more truth is needed in these facts sheets. We really need it to give a greater picture of the reality of this disease and what comes with it.
Also, little is said about social isolation or the issue of invisible diseases. Those two issues are key factors in most of our lives who have not found remission. I think this is a very important part of my daily life and the lives of so many others here.
Anyway, I feel like I veered off topic but the important message that I feel should be included in a fact sheet is the hard topics that nobody ever wants to state. Obviously, it should be stated with more diplomacy and tact than I have stated but you get the picture... I hope.
Okay, enough from me. Thanks for posting this and thanks for the input by all of you. I think that this is very educational just to hear the brainstorming of others on the topic. Great ideas.
Hugs all!
Angie