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Old 03-05-2019, 11:54 AM
susan_mela susan_mela is offline
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Join Date: Feb 2019
Posts: 18
5 yr Member
susan_mela susan_mela is offline
Junior Member
 
Join Date: Feb 2019
Posts: 18
5 yr Member
Default Mestinon schmestinon....

Hi again, Daniel (and wife),

The main factor I look for in the Mestinon too much vs normal side effects area is whether I can feel *weakness* symptoms worsening as the medicine gets towards new dose time (a sign you are needing the dose), ie can I feel the medicine wear off to negative *strength* effect. I always liken it to feeling like I am "wilting." I do know that years ago I was indeed taking too much, before I knew this judgement test. I became disoriented, with brain fog, and was even drooling a bit.

The feeling of Mestinon kicking in properly on non-ocular muscles is a bit like feeling a tire be inflated when it was previously useless and flat. That wilted plant gets water and perks up again. Droopy eyelids should pop open when the drug is 100 effective. In all honesty, my vision has not been normal for so long that I compensate somehow now with the minimal-spacing halo-ish double vision it's seemingly stuck at, which I've had as long as I can remember. I did not even *realize* this until after my crisis when I started asking a lot of questions to make sure I was correctly answering the "double vision" question. Even if straight ahead is okay, up, down, or peripheral is wonky. If it does get to "drunk double vision" I still don't necessarily mentally realize it until I'm knocking glasses off of shelves. From pictures, I know I had a droopy eyelid as far as 22 years back.

Mestinon starts working quickly if you are responding properly. Within 15 minutes, your wife should be seeing some improvement. I tend to get maximum results in a half hour at most. Still, be careful, because 15 minutes / half hour can be crucial with this disease. Maximum results does not mean "full normal strength" for many patients. Even with Mestinon AND IVIG I have had about 9 days in the last year that I would possibly categorize as anywhere near "normal" non-ocular strength. Then, when this point arrives, great care must be taken not to do too much at once with your new found super power. One must also remain vigilant as to returning symptoms, because they often do. Despite all of this, I celebrate that I am not bedridden.

As for initial effect after starting treatment... I do remember having my first follow up neuro appointment post induction after about 2 weeks, so I can summize that it should be kicking in by then.... ???? Everything was so new to me at that point, that factor got lost in the haze.

Once again, pls be sure to run the Lactose theory by your doctor.

Thank you for your input re: my IVIG post. Had you gotten the DM I sent, re: own site vs Etsy? That website has been absolute hell, because I am too stubborn to use a template. Most were too generic for me, or are just not good for my own site aims. Without my own models, or money to buy a lot of my own printed merch, I have to get the site looking interesting somehow. I felt a template wasn't going to do it. Wordpress.org platform is a LOT more involved that my ISP salesperson admitted (AVOID GODADDY!!!!). Keeping up with the purely technical IT kind of end has sapped so much of my time and energy that I should have for creating. Never ending. Thanks for letting me know about the logo link. That's probably a leftover side effect of using a plug-in at one point that is pervasive in the WordPress world, but really causes loads of problems. Also the reason why I'm using PayPal shopping cart and not a bigger "store" plug-in (like WooCommerce). I'll look into the bug. Currently working on setting up art vs MG posts as separate base blog landing pages.

LMK if direct messages are even coming through.... probably a better platform for business topics (which I am glad to have an open dialogue about).
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