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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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10-02-2012, 04:05 AM | #1 | ||
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"With appropriate treatment, myasthenia gravis can usually be effectively managed with little impact on life expectancy. However, about 10% of the patients have life-threatening respiratory muscle involvement."
When I was first diagnosed with MG (after a year, you're just crazy / it's stress / it's eating disorder), I was told by my doctor I had nothing to worry about. He said: it's a disease that's eaily treatable, there's no impact on life span. Just take some mestinon, eat 2 eggs a day and you'll be okay! Well, things turned out differently (crisis, wheelchair, etc). But still, when I looked up MG I found stuff like "With appropriate treatment, myasthenia gravis can usually be effectively managed with little impact on life expectancy." But...no one told me this "appropriate treatment" DOES effect your life expectancy. Prednison can cause diabetes (check!), heartproblems (check!), addisonlike reactions (check!), osteoperoses (check!). Immune supressant can cause multiple damaging problems, like livercirroses (check!), kidneyproblems, infections, cancer. All stuff that does have impact on life expectancy. I just find this a "funny" contradiction. |
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10-02-2012, 05:34 AM | #2 | ||
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And IŽm so sorry you are getting theŽdomino effect diseaseŽon top of the equation |
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10-02-2012, 07:19 AM | #3 | |||
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So sorry for all the effects from the medication you are experiencing. I guess it is how you define "little impact on life expectancy". When you are living it, it has a very large impact.
I am curious about one statement you made " eat 2 eggs a day ". Are eggs suppose to be beneficial? Have any doctors recommended certain foods/dietary restrictions that might help symptoms? kathie |
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10-02-2012, 08:27 AM | #4 | ||
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But I do mean life expectancy in my story. Because they kind of told me my life expectancy is rather lower then it should. Heartproblems, diabetes and especially the liverdamage are taking years off. Not that I really do care, I care much more about quality (of course!) but it's just something I find remarkable. Because every leaflet I got with MG information, says the opposite. And true, it is just "luck" I got those damaging, some irreversible, side effects, but still... It's not that uncommon to get this kind of problems if you take steroids / immune suppressors for years. @Kathie, this is what my neurologist told me to do... His thought was: you're weak. Protein is good for muscles. There's loads of protein in eggs. No scientific stuff, just something he said. I never ate 2 eggs a day, how can you do that :O and what aboit cholesterol? Maybe we just try it all together, lets all eat 2 eggs a day for a month, see what happens! |
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10-02-2012, 09:06 AM | #5 | |||
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Thanks, I did not know to eat more protein. I think I have been eating less because it is so hard to chew meat. I think I will have to make some omelettes for dinner!
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10-02-2012, 10:06 AM | #6 | |||
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I need to eat more eggs anyway. I have 10 pet hens.
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Celeste |
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