Tough Day
 

It's about 90 degrees here in southeastern KY. The wife and I went shopping today. The heat about sucked the life out of me. We went to a restaurant and I ordered a hamburger. I had a lot of trouble eating it. My jaws started feeling really tired and my tongue got thick and started hurting. I'd stop after a few chews to rest and then resume chewing. This is the worst spell of this I've ever had. It had largely disappeared after I started Mestinon but today it was back with a vengeance. I hope this was just transitory. :)

On a positive note I got a Rollator today and really like it so far. I was so tired that I didn't get to try it out much today and am going to test it out at WalMart soon.

Uncle Dave, sigh, I've been there. I want you to be extremely cautious when you get that kind of sensation from your tongue, in particular, when it feels thick, or stops working, all together. If it happens again, and it's likely, at this point, I suggest you lean over, place a napkin to your mouth, and let the food fall into your napkin. And then wait. I would like you to try to avoid using your fingers, if possible, because sometimes we can push the food in, however, I had to use my fingers like pincers, sometimes.

I also would ask that you report the tongue incident to your neurologist.

I would suggest to any person who is experiencing this, book an appointment with a dietitian, or dietician <<American spelling... They
can advise you about a "soft food diet."

Note to Canadians: In some provinces, your neurologist can refer you to a hospital dietitian for one visit, which is covered provincially.

Uncle Dave, the heat did me in this weekend too, it was 90 degree for 4 days. I am sooooooo sensitive to the heat too. ANd it takes days to recover, even if the temperature drops. SO rest up, stay in the air conditioning. Even hot foods can affect MG.

I do everything I can to stay cool. Park the car in the garage so the car does not get to hot and I do not have to go outside to get in the car. My air conditioner has been on for weeks, even if you keep it low and the windows shut, it keeps the house cool. I only go out early in the morning or in the evening after it has cooled down. Take cold showers, drink lots of cold liquids.

kathie

Thanks! I will definitely report it. I have to go back in about 3 weeks anyway.

I hope I don't have to go to soft food but I can't handle too many days like today.

thanks again!

I see we're in the same boat. I stay in my bedroom most of the time. A window air conditioner keeps it below 70 at all times. I do fine with temps in the 60s. Today I had to go out and it felt like I had walked into an oven. Since starting Mestinon I thought I was noticing that I tolerate heat better but clearly, today anyway, that is not the case.

Thanks for replying. :)

I have been there and still struggling with the tongue weakness. Only thing that saved me for a few weeks was the plasma...or plex... hate the catheter in the neck though. Don't want another really,mines still healing from being removed. Stay cool and try to let ur mestinon kick in b4 eating. It helps me though days we are weaker in different areas of our bodies. I hope your okay. Godbless

Lisa

I believe you have hit the nail on the head! It was time for my Mestinon just before I ate. There wasn't enough time for it to kick in before I started eating my meal. I will try to remember this next time.

Thanks for this!

Uncle Dave
 

Sorry to hear of your problem. I don't have real serious symptoms as of yet, but, I increased my mestinon to 4 x 60 per day, and thought I was doing even better, but I now the left eyelid droopy quite often.
So, I know what you mean when you think its all better. Good luck, and maybe it wont happen that often.

FREDH

I have found that my eyes symptoms are not as responsive to treatment and predictable and not always a good indicator of my generalized MG.

kathie