[hajile99]

I first started experiencing chewing and speaking issues about three weeks ago. I got officially diagnosed with MG last Wednesday and have been on Mestinon since. It was working pretty well on my chewing and speaking issues during my first week on it, but this Wednesday and since, the chewing issues have come back (along with one episode of speaking issues).

How do you deal with eating when you're having a hard time chewing? I hate having to rely purely on mushy or finer foods, but I lose so much strength in my jaw that I can't even bite through a piece of lettuce. Sometimes I can "manually" chew by literally taking my hand and moving my lower jaw up and down, but that doesn't always work either (and gets rather tiresome). Any ideas or suggestions?

Thanks!

Adam

[alice md]

I hate having to rely purely on mushy or finer foods

Makes sense, but it seems that this is what you have to do until things start to improve. (It sounds like you would probably need more treatment than mestinon).

It is a bad idea to push yourself to chew, because you can end up having swallowing difficulties as well.

I had periods in which I couldn't eat or drink. The only way to get my required fluids and nutrition was by mixing a thickener into fruit juices and slowly eating them with a spoon with frequent rest periods during the entire day. I couldn't even swallow more than a few spoons in a row.

Speaking, chewing, swallowing and even breathing involve similar groups of muscles. When you are experiencing difficulties speaking don't eat. Rest a few hours before each meal (which means do as little physical activity as possible and avoid talking) and take your mestinon pill about 30 minutes prior to when you plan to eat.

There is a good chance that with proper treatment you will do much better within a few months. But, you do have to take it easy meanwhile so that things don't deteriorate. Take into account that myasthenia is an illness in which muscles become weaker with repeat use (the opposite of what happens to normal people whose muscles become stronger the more they do). That is why your can probably chew a few times, but then can't any more. That is why you have to put less efforts into the eating process and let your muscles rest and recover between each bite.

Take care and hope you do better soon,

alice

[4-eyes]

Alice is right...you have to embrace the state you are in at the moment.

I had a LOT of oral motor problems. I would choose softer foods and then mince them with my knife before eating them. I would choose hearty, yet SMOOTH soups. If all else failed, I'd drink my meals--smoothies, etc.

Interestingly, I always found stuff like tortilla chips, potato chips, etc, fairly easy to eat. They would shatter in my mouth and then break down pretty fast.

Good luck!

[Juanitad]

I agree with both Alice and 4-Eyes - I would also suggest you call your neuro - as Alice indicated, you may need more treatment or maybe the neuro an adjust your mestinon dosage - you didn't say how many mgs' you are on and how far apart you take them. There is a lot of room for adjusting the mestinon and it may help.

Good luck!

[hajile99]

Thank you for all your input. I guess it's just a mentality you learn to embrace. I think I'm still at a point, since I haven't been dealing with this all that long.

I'm currently taking 60mg of Mestinon three times a day. I've learned to time it about 30-60 minutes before I eat to maximize the benefit (from an eating perspective), but that wasn't working so well the last couple of days. Today has been better.

I've already thought about talking to my neuro about trying to add another dose each day, but I'm trying to hold out for just a little bit to see if it comes back down to at least what it was just after I started the meds.

Thanks again for your input!

[PhotoBug50]

Originally Posted by hajile99

Thank you for all your input. I guess it's just a mentality you learn to embrace. I think I'm still at a point, since I haven't been dealing with this all that long.

I'm currently taking 60mg of Mestinon three times a day. I've learned to time it about 30-60 minutes before I eat to maximize the benefit (from an eating perspective), but that wasn't working so well the last couple of days. Today has been better.

I've already thought about talking to my neuro about trying to add another dose each day, but I'm trying to hold out for just a little bit to see if it comes back down to at least what it was just after I started the meds.

Thanks again for your input!

Personally, I did not notice much of an improvement in chewing strength and improved swallowing until I got up to 60 mg's Mestinon 4 times a day, taken during daytime, so each dose is 4 hours apart. IVIg and presnidone may also have helped improve it, but I see more of a cause and effect with Mestinon. Speaking is okay now with me, except that I an stuck with that weak "Godfather" voice, but it beats the "Hellen Keller" garble that occurs when those muscles completely fail. Going in for Thymus Cat Scan with contrast today....will see how that thing looks. Still early days, diagnosis just one month ago, although I clearly had deteriorating symptoms for the last 6-8 months. Peace be with you. P.S. You know if you have a good food processor or blender (I have the Vitamix 5200) you can whip up some pretty good tasting and nutritious stuff in there. I've been combining fresh veggies right from the garden with organic fed chicken. It comes out in a puree but boy is it tasty...and easy to swallow.

[hajile99]

Originally Posted by PhotoBug50

Personally, I did not notice much of an improvement in chewing strength and improved swallowing until I got up to 60 mg's Mestinon 4 times a day, taken during daytime, so each dose is 4 hours apart. IVIg and presnidone may also have helped improve it, but I see more of a cause and effect with Mestinon. Speaking is okay now with me, except that I an stuck with that weak "Godfather" voice, but it beats the "Hellen Keller" garble that occurs when those muscles completely fail. Going in for Thymus Cat Scan with contrast today....will see how that thing looks. Still early days, diagnosis just one month ago, although I clearly had deteriorating symptoms for the last 6-8 months. Peace be with you. P.S. You know if you have a good food processor or blender (I have the Vitamix 5200) you can whip up some pretty good tasting and nutritious stuff in there. I've been combining fresh veggies right from the garden with organic fed chicken. It comes out in a puree but boy is it tasty...and easy to swallow.

I'm strongly considering discussing an increase in dosage with my doctor because it just doesn't seem to be helping much at all. Hoping the IVIg will help, if it ever gets approved by my insurance. And I'm actually going in for a cat scan tomorrow. Hope yours went well today!

I really hate the thought of resorting to liquid or pureed food, but I guess I'll just have to deal with it if that's what it comes down to. The Mestinon seems to have helped enough to at least get me through a meal as long as I time it well enough.