Quote:
Originally Posted by suev
Abby, I agree completely with what you're saying...but that may be because I am one of the MG'ers who experiences comparatively little inconvenience from MG and am quite a bit older than most here. I am pretty sure if my life were impacted to the degree of many of the others in this forum, I would have difficulty seeing MG as anything other than horrible.
But, I also think it is important that everyone who visits this forum realizes that there are two sides to the coin (so well put, Abby). My concern at first was ..would my MG progress to the point I would have a crisis or need aggressive treatment (which to me means anything more than taking Mestinon!)...and if so, how long might it take? So many here were having such a difficult time...it was kind of scary for me.
I would simply like to say that I'm lucky enough to represent 'the other side of the coin'. It's been almost 3 years...and while I notice a few bulbar issues that weren't there 3 years ago...everything is pretty much the same. And I can still do most everything I want - just geared down and for shorter periods of time and with a little help from my generic mestinon!
I still worry about progression..but I learn so much from people in this forum. I feel like I know what kinds of things to watch for, things to do - and not do, how to recognize signals of deterioration EARLY so I can pull back and hopefully avoid a real problem.
So, for what it is worth, there is another side of the coin - we just maybe don't post as often.
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I agree that it is important to know both sides of the coin. It is good to know that you can have MG with relatively minor symptoms and it does give hope.
Yet, it is also important that people will know that MG can be a very serious and significantly debilitating disease.
Like you yourself say, knowing about the way it can be, gave you more confidence and knowledge about how to recognize early worsening and avoid further deterioration. It did not create unreasonable concerns and fears.
Research aimed at finding better treatment approaches for patients with more severe diseases, will also give more confidence to you.
Knowing that patients with more severe disease receive adequate care and support from their physicians and the society, will also give you more confidence.