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Member
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Join Date: Oct 2006
Posts: 371
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Member
Join Date: Oct 2006
Posts: 371
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Annie
Annie, and all,
Yeah, I'm kind of on the fence but leaning towards progression, on whether or not it's an actual progressive disease. The experts will say no to it being "tech.." progressive like MS, or like diseases. But maybe thats the problem, they're comparing it to other neuro muscular diseases, and maybe they shouldn't.
I let mine go too long, and I feel a lot of damage was done to me too. With meds, I feel I'm not as fragile as I was when I was first diagnosed, and yet, I have some areas of muscles that feel much more weaker than they were in the beginning. Now, whether this is progression, or muscle wasting from not being used, I just don't know.
For myself, I feel there needs to be much more research, and understanding, before they keep this as an "Unprogressive" disease.
The sticking point for myself is, if it's not progressive, then why do many MG'ers believe they noticed a slow weakening years before an actual trip to the doctors was made. And I know of many, who are much worse, than when they first went to a Neuro Muscular specialist.
Either way, It's an awful disease to live with on day to day basis.
I'm so thankful, I have a wonderful Neurologist, and team of doctors, it really makes a difference. They've given me so much material over the years to read. Being completely knowledgable makes a huge difference in how we deal with living with this monster.
Love Lizzie
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