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Old 04-25-2012, 06:47 PM
4-eyes 4-eyes is offline
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Join Date: Aug 2009
Posts: 642
10 yr Member
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
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Hi,

I am one who has had lots of problems with both vision and oral motor skills. It is VERY scary, and I actually had to have the Heimlich done twice by my hub and I did it once on myself when I was eating at home alone. Please make sure everyone in the home knows how to do it and if you have to do it, don't panic. It really DOES work! (Now let's hope your FIL never needs it!)

I would suggest switching to "nectar" consistency foods---smoothies, fruit slushes, etc. You can add nuts to the smoothies for extra protein. Scrambled eggs, mashed potatoes (whipped to a fluff), cottage cheese, yogurt, etc, all may be easier to handle. Cooler works better than hot, and very cold foods can also be problematic. He will have to find what works best.

If your FIL begins to have difficulty with handling his saliva--unable to swallow it, drooling, etc, he is in crisis, and needs to be seen immediately. When I went in for my reboot, I had been off of all drugs for 2 weeks. I was so weak that my palate wouldn't even lift to block my airway, making it more or less a straight "chute" from my mouth to my lungs.

As for the mestinon, it doesn't sound like it's enough to me. I never used it, but I would sure run these symptoms by the doctor as he should be showing at least some improvement from the pred by now.

As for remission, it doesn't happen very often. I know of a few cases, but most are able to "manage" things with a few adjustments and then others (often those on message boards) struggle for the longterm. As for me, I had a particularly rough road, but had chemo to reboot my immune system. Even though I'm SO much better now, there are still remnants of MG (and the chemo that helped me so much) that I deal with on a daily basis. I would use caution with the offering of false hope.

Good luck.
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"Thanks for this!" says:
Marin826 (04-26-2012)