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xmas 25 05-22-2009 02:31 PM

dumb eye question
 
just diagnosed 2 months ago however my only eye problem is doulbe vision but today as some other days when i tried to open eyes after laying down this afternoon-i couldn't. it seemed like 3-4 mins but probably only 1 min. is it just something normal people have or only us special folks? never know what is normal or not due to fact i have another longstanding illness with med issues.i always blamed tiredness on the other and its meds. even leaning on grocery cart which i don't do as often since mestinon. this is so confusing-i wish i could just take some meds,adjust my attitude to mg and get on with my life!!! i hate mg!! thanks i just had to say that right now have a great w/e!:confused:

Pat 110 05-22-2009 03:12 PM

Quote:

Originally Posted by xmas 25 (Post 513671)
just diagnosed 2 months ago however my only eye problem is doulbe vision but today as some other days when i tried to open eyes after laying down this afternoon-i couldn't. it seemed like 3-4 mins but probably only 1 min. is it just something normal people have or only us special folks? never know what is normal or not due to fact i have another longstanding illness with med issues.i always blamed tiredness on the other and its meds. even leaning on grocery cart which i don't do as often since mestinon. this is so confusing-i wish i could just take some meds,adjust my attitude to mg and get on with my life!!! i hate mg!! thanks i just had to say that right now have a great w/e!:confused:

Hi,

I don't know if your other medical issues or meds could be causing this, but it certainly is something that I and many other MGer's have experienced. Some only have that symptom when they're eyes are tired, and other's like myself can have that happen at anytime. Mestinon usually helps me. You may want to call your neuro and let him/her know you are having this new symptom. Yes, it is all very confusing right now, but you'll learn as you go along. Just remember, it will get better! This is the place to be when you need to vent...isn't it great! You hang in there and have a great weekend too.

Take care,
Pat

erinhermes 05-22-2009 03:42 PM

Hi xmas!
 
Hello xmas! Yep - we MG'ers are a special, special group of people! The eye thing totally MG related . . .I had problems keeping mine open before I was dx'ed! Totally stunk! I have not that problem since I started on the pred......

Hang in there, sweetie! The 1st year IS ALWAYS the HARDEST! They are trying to adjust your meds, make sure you don't have a crisis, etc, and tons of appts., but it is all worth it! :D

It does sound like you need to "up" your meds - mestinon doesn't always do it - especially if you are really weak!

Can't wait to hear from you!
Erin:D







Quote:

Originally Posted by xmas 25 (Post 513671)
just diagnosed 2 months ago however my only eye problem is doulbe vision but today as some other days when i tried to open eyes after laying down this afternoon-i couldn't. it seemed like 3-4 mins but probably only 1 min. is it just something normal people have or only us special folks? never know what is normal or not due to fact i have another longstanding illness with med issues.i always blamed tiredness on the other and its meds. even leaning on grocery cart which i don't do as often since mestinon. this is so confusing-i wish i could just take some meds,adjust my attitude to mg and get on with my life!!! i hate mg!! thanks i just had to say that right now have a great w/e!:confused:


cricket001 05-22-2009 09:58 PM

I know how you feel! I was diagnosed in August....ignored it...ran away from it.....and now I am coming to terms with it. Mestinon is a wonder drug! My body tells me when it is time for my next dose....

I know that I am not out of the woods...and there will be more crisis down the road...but I do know now...there is a light at the end of the tunnel! :hug:

Stephanie


Quote:

Originally Posted by xmas 25 (Post 513671)
just diagnosed 2 months ago however my only eye problem is doulbe vision but today as some other days when i tried to open eyes after laying down this afternoon-i couldn't. it seemed like 3-4 mins but probably only 1 min. is it just something normal people have or only us special folks? never know what is normal or not due to fact i have another longstanding illness with med issues.i always blamed tiredness on the other and its meds. even leaning on grocery cart which i don't do as often since mestinon. this is so confusing-i wish i could just take some meds,adjust my attitude to mg and get on with my life!!! i hate mg!! thanks i just had to say that right now have a great w/e!:confused:


ras1256 05-23-2009 01:07 AM

Patience, Xmas, is the key. And the hardest thing to come by at first. As you learn though, you will come to "adjust" your attitude to MG and accept some limitations, although as your understanding grows and you get more familiar with how MG affects YOU (it's different for everyone) you'll also learn how to control it better so you can be on a more even keel. I love the way you vented, and then changed the tone so quick! When I vent it usually ends with some whiney little line at the end.

Hang in there! We're all here and pulling for you!

ras1256 05-23-2009 01:08 AM

Patience, Xmas, is the key. And the hardest thing to come by at first. As you learn though, you will come to "adjust" your attitude to MG and accept some limitations, although as your understanding grows and you get more familiar with how MG affects YOU (it's different for everyone) you'll also learn how to control it better so you can be on a more even keel. I love the way you vented, and then changed the tone so quick! When I vent it usually ends with some whiney little line at the end.

Hang in there! We're all here and pulling for you!

xmas 25 05-23-2009 08:56 PM

i just want to not waste too much frustration and anger that gets me nowhere,i need to move forward as quickly or slowly as god will let me.i also hate people who complain,complain-we all know some of those. yes we all have bad hrs,days,wks,months or yrs but jump over and live as best you can.i have had all kinds of wierd illnesses,longstanding gi issue that has had 4 surgeries-4-6 hrs each and 2 weeks 2 hrs from home in boston hosp.12 procedures requiring 1 month in hosp each over 6 yrs.and now MG AREN"T I LUCKY? THE LUCKY PART OF IT IS MEETING,SHARING,LEARNING AND VENTING WITH ALL OF YOU!!!THANK YOU!!! HAVE A GOOD W/E!!! :grouphug:

Pat 110 05-24-2009 08:37 AM

Quote:

Originally Posted by xmas 25 (Post 514201)
i just want to not waste too much frustration and anger that gets me nowhere,i need to move forward as quickly or slowly as god will let me.i also hate people who complain,complain-we all know some of those. yes we all have bad hrs,days,wks,months or yrs but jump over and live as best you can.i have had all kinds of wierd illnesses,longstanding gi issue that has had 4 surgeries-4-6 hrs each and 2 weeks 2 hrs from home in boston hosp.12 procedures requiring 1 month in hosp each over 6 yrs.and now MG AREN"T I LUCKY? THE LUCKY PART OF IT IS MEETING,SHARING,LEARNING AND VENTING WITH ALL OF YOU!!!THANK YOU!!! HAVE A GOOD W/E!!! :grouphug:

Hi Xmas,

We all have those days, and then they pass. Sounds like you have been through a great deal already and I'm sorry to hear that. This is such a great place and everyone is so kind and supportive. I wish this was here when I was diagnosed in 01, but I'm so happy to be part of the group now! Hope you are enjoying the weekend.

Take care,
Pat

leaningin 05-26-2009 11:06 AM

Mestinon Side Effects
 
Quote:

Originally Posted by cricket001 (Post 513865)
I know how you feel! I was diagnosed in August....ignored it...ran away from it.....and now I am coming to terms with it. Mestinon is a wonder drug! My body tells me when it is time for my next dose....

I know that I am not out of the woods...and there will be more crisis down the road...but I do know now...there is a light at the end of the tunnel! :hug:

Stephanie

HOW do you handle to side effects of Mestinon? I get such bad gastro-intestinal side effects that I cannot function. Am I the only one?
Martha

Nicknerd 05-26-2009 11:34 AM

Trouble closing eyes?
 
Has anyone had trouble closing their eyes? For many months, I was waking up with swollen eyelids and I realized that I was sleeping with my eyes partially open...

One night, during a very bad 'flare,' I couldn't close my right eye at all...I tried using my fingers, and nothing worked..lol...That whole side of my face was really droopy. Finally, after a few hours, I was able to sorta close it enough to fall asleep...


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