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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#21 | ||
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I gathered that... so how does one get past that.
My fear is that I will end up on a years long course, of complaining to GPs. Not that that would be a problem, but in the meantime my general health is getting worse. I have already put on 5 kilos since this started, because I can't exercise, anymore. |
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#22 | ||
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OK, it is some time since I posted in this thread. 5 months on I still do not have a confirmed diagnosis. However I have been able to get my GP to prescribe Mestinon on a trial basis. The effect is dramatic.
But this thread is Mestinon vs Caffeine. Whilst these are subjective, and personal results I can know give some answers. 200mg caffeine tablet, claimed to be equivalent to 1 large strong cup of coffee. CI effect is about the same as 5mg Mestinon. I am now on 30mg Mestinon every 4 hours. To reach that level of effect with caffeine alone I would have been taking more than the reccommended daily dose, every 4 hours. Clearly that would have caused serious side effects. But at least we now know... 200mg caffeine is approx equivalent in CI effect to 5mg Mestinon. |
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#23 | |||
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Mike,
I make a coffee drink with Almond Milk. I use a handful of Ghirardelli Classic White Chips, 12 ounces of Vanilla Almond Milk, and two table spoons of Nescafe Clasico Dark Roast instant coffee crystals. I blend in the Vitamix. I usually poor into a glass and put the mixture in the freezer for 15 or 20 minutes. You can also use more or less Ghirardelli chips to make it more or less sweet. -Mark- |
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#24 | |||
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Member
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I just love the old fashioned cup of coffee.
Mike |
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#25 | ||
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Grand Magnate
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No, JJ, we don't know!
You can't say that your experiment will work with all MGers. We are all "variable" given how MG is. To measure a constant against a variable doesn't work. http://www.apelslice.com/books/97806...id4636650.html You have to take into consideration all constants and variables (i.e., varying strengths of coffee). Even then, you'd have to involve a large group of MGers to test that theory. I'm glad Mestinon is working for you. I like my coffee organic, black, and hot. Simple and yummy. Annie |
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#26 | |||
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Member
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I love coffee and I drink it every day. It does seem to help me feel better.
The issue with using it instead of mestinon for me is that caffeine crosses the blood/brain barrier whereas mestinon does not to any appreciable degree. If I try to drink coffee late at night, I won't sleep at all. Mestinon helps me breathe during my sleep.
__________________
Celeste |
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#27 | ||
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Grand Magnate
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A smattering of articles on what caffeine does.
http://www.ncbi.nlm.nih.gov/pubmed/20164568 http://worldofcaffeine.com/caffeine-...otransmitters/ http://www.ncbi.nlm.nih.gov/pubmed/7154859 http://www.news-medical.net/health/C...rmacology.aspx And an article on why they are still arguing over whether Mestinon crosses the BBB (particularly the hypothalamus). But, of course, we aren't mice. http://www.jmedcbr.org/issue_0601/Cool/Cool_10_08.html Lots of variables can probably effect both. Annie |
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"Thanks for this!" says: | Panorama (11-02-2014), southblues (11-02-2014) |
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#28 | ||
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Member
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Hi Annie,
I did state; Quote:
Having made that proviso, I still think that my subjective and personal results are interesting. I would welcome other people testing this, BUT, there are very few people who would be in a situation where such a test was possible or advisable. What is also, I think, interesting is that, I am now on 30mg Mestinon every 4 hours... that works fine. By my estimation to have a similar effect purely with caffeine, would require 1200mg. That would be in one dose a daily overdose. Repeating that would cause serious side effects, possibly fatal. It also suggests that the effect of a cup of coffee is relatively small, and should not have a vast effect on MGers. |
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"Thanks for this!" says: | AnnieB3 (11-05-2014) |
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