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-   -   good neuro visit! and Mestinon every 2 hours? (https://www.neurotalk.org/myasthenia-gravis/118393-neuro-visit-mestinon-2-hours.html)

AnnieB3 04-06-2010 09:16 AM

Sue, Eat whatever you want! The body is usually very good at adjusting our electrolytes. If you have a hard time drinking water, have you tried flavored water like LaCroix? I like the bubbles. ;) And I think that it doesn't matter if you finished the round or not. A hole in one is a hole in one!!! If they made you buy drinks at the clubhouse afterwards, it should count (that's what happens after anyone does that at my Mom's course).

Abby, that explanation was cute and simple (for your kids). They can handle that.

Stellatum 04-08-2010 09:35 AM

Well, I was trying the Mestinon every two and a half hours, but I haven't felt better, and it makes me really twitchy. On my every-three-hours dose, I would get an occasional twitch--but nothing like this.

I only tried it for a few days. It's so hard to tell whether you're experiencing a fluke, or a real response to what you've changed. But I know that too much Mestinon causes muscle twitches, which makes sense to me: too much acetylcholine, over-stimulating the muscles=twitches. So I really think I'd better back off.

Thanks again, Annie, for your warnings, which I have taken seriously.

Abby

DesertFlower 04-08-2010 10:16 AM

Abby,
I found that through experimentation, similar to what you are going through with limits discussed with my doctor, I was able to find the dosage of Mestinon that helps me the most. It makes a huge difference to find that dosage that works best. I found that any changes to that schedule make my symptoms worse. Mestinon doesn't make my MG go away completely but it does reduce them to levels I can find a way to live with. :)

DesertFlower 04-08-2010 11:43 AM

Mestinon dosage
 
Abby,

I wanted to add to my previous entry.

I am still learning about MG and Mestinon, and I am glad you have joined this group. Please continue to share your experiences since we all learn from each other.

I have learned what Mestinon dose helps me for a regular day, but I have not figured out how to deal with these days that are different, days when I am tired, days when I work extra, or days when I feel sick. I think that I may need occasional changes to my Mestinon but I haven't figured out what works yet.

Sometimes when I relax all day I feel like I am taking too much Mestinon, yet I still take it regularly. Maybe on these slow days I should take less?

Also, I have noticed the monthly hormone cycle has a big effect on how I feel and I wonder if I should be adjusting the Mestinon for that since there is about 1 week in every month where I am finding that I feel pretty good and that is the time when I get Mestinon overdose feelings. Also there is another week every month that I feel bad and probably need extra Mestinon.

My doctor insists that I take Mestinon regularly and only change the dosage rarely and if I am absolutely needing more or less. He wants me to stick to a schedule no matter how I feel, unless of course I am getting overdose symptoms or getting so bad that I have to stay in bed. I am following his orders for now, but realizing that he might be wrong.

He has given me an okay to adjust my dose when needed, so I am considering taking a little extra when I feel bad and possibly a little less when I feel good even though this isn't what he intended.

I am still learning.


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