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Old 01-21-2012, 11:57 AM
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teresakoch teresakoch is offline
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Location: Fort Worth, Texas
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teresakoch teresakoch is offline
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Join Date: May 2010
Location: Fort Worth, Texas
Posts: 199
10 yr Member
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I have often heard less is more even with medicines. I know wonder why they would have him lower the pills to 2 and not cut the mg's in half instead.

Probably it's because most doctors don't KNOW how Mestinon really works in a person's body - that isn't a knock on doctors, but someone who hasn't ever taken Mestinon (and most people can't tolerate even a small amount of it) truly can't understand its effects on the body.

The "normal" response for medications - and we all do it "unthinkingly" - is, "If it's not working, take more; if it's working too well, take less". And for most OTC medications, you take them as needed.

Mestinon is a weird little drug, and most people in the general population would get violently ill if they took even a small amount of it. Taking too much of it will make a person - even one with MG - violently ill (and too much can lead to a cholinergic crisis); that's why they start us off with a very low trial dosage.

Because of the nature of MG and the half-life of Mestinon, it is much more important to first find out the AMOUNT of Mestinon that a person can tolerate. Once that amount has been established, you can then move on to figuring out what time interval works best for each individual patient - for some people it's 4 hours, for some it's 6 hours, for others it's 3 hours.

Each person is unique, and what works for one person will not necessarily work for any other person. MG is a highly variable disease, and because it is so rarely diagnosed, there is no such thing as a "typical" patient.

Mestinon is one of those drugs that you can take more OFTEN on one day than another (it usually depends on your level of activity more than anything else), but you CANNOT take more of at any one time. That is, if you are feeling particularly tired, you may be able to take your "regular" dosage 2 hours apart rather than 4 hours apart, but you cannot take double your dosage at one time (that could put you in a potential crisis situation).

Our bodies can only tolerate so much Acetylcholine at one time. Alice MD explains it MUCH better than I can.....

I hope that you and your loved one are able to find answers soon - and I, too, hope that IF you are, indeed, looking at a neurological condition that it is something more along the lines of MG rather than ALS.
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