I was diagnosed on Wed. by the Neuro/Optho with Ocular MG. I think they did every eye test imaginable!!! I was a little surprised by being DXed with Ocular since I have weakness in my left arm and hand. The Dr. doesn't think that is related to the MG. I am now wondering if there is something else going on or if he is wrong. I started noticing it about 6 months ago. When I would wake up in the mornings my arm and hand felt weak and shaky. I also had a hard time when i was blow drying my hair or putting dishes up on shelves above my head. That was several months before the ptosis started and I thought maybe I was sleeping on it wrong. He is going to start me on Mestinon after the testing is all finished. I had the antibody test on Thur. and am scheduled to see a MG Neuro specialist on Oct. 1 for an EMG.

My questions is has anyone ever noticed the ptosis getting much, much worse after all the eye tests? My eye hasn't been the same since. It is so droopy that sometimes it shuts and feels like it is sticking. It takes a few seconds to get it open again. I feel like it must be related since that is when it started getting worse. I have tried ice packs and am getting plenty of sleep and nothing is helping. I am hoping it will improve again as the days go by.

DL
I actually went into crises one time during an eye exam, they had done a lot of testing that day. The eye doctor had to call an ambulance, & off I went. I had been in a weakened state anyways, but it put me over the edge. They are working your eye muscles, anything repetitive with us is weakening!

Mary

I was actuallt DXed with generalized MG because after the birth of my son I couldn't hold him for more then 5 min at a time and preparing bottles would take over an hour and forget putting dishes away, then came the day in the store when I couldn't write a check. When I got home that night I couldn't walk up the stairs, I actually had to lay the baby on my lap and drag us up the stairs.

My OBGYN actually knew what it was and called a Neuro who gave me a tensilon shot and said ohhh yeah you have MG, he asked if I had double vsion and when I said I have had it since I was a child he was shocked the eye Dr. didn't find MG but I guess they didn't know much about it back then.

Today I suffer mostly just the double/blurry vision and only get weak all over when sick or very stressed.

I wish you luck with your MG and remember that no question is silly as we all have suffered one thing or another.

Hey hon! I am really surprised that you were only dx'ed with ocular MG - esp given the general weakness!
I noticed that drying my hair was a problem long before my eyes started going "wonky" on me.......in fact to this day I still have days where I have problems with holding my hands above my head - my arms just get too weak. Then there are other days when I can move an entire sofa - no problem! LOL!
The only thing you can count on with MG is that you CANNOT count on anything! Every day is an adventure!
By the time I was dx'ed everything was too much for me! I spent bout a month in bed and was unable to eat, so the eye thing wasn't too bad - it was the eye PAIN that was unbearable!
I know you have answered this already, but chalk it up to my MG brain fog - are you on pred yet? It does really help! In fact, you may have a bit too much energy until your meds are where they NEED to be! @ 80 mgs, I was bouncing off the walls! After being bedbound for so long, though, I loved it!
How are you today?
Love,
Erin

Mary,
My gosh that is terrible that you went into crisis during a day of eye testing! I will say I was flat wore out by the time I got home and slept for 2 hours. The field vision test was the worst. I literally couldn't hold my right eye open anymore and she kept telling me to try and focus. I wanted to scream "I'm trying but I can't see!" I just keep hoping I will start seeing some improvement again soon. It is driving me crazy!
Kendra

Mary,
My gosh that is terrible that you had a crisis during an eye exam and had to leave in an ambulance! I can say i was flat wore out by the time I got home Wed and slept for 2 hours afterwards. The field vision test was the worst! I literally could not hold my eye open anymore but she kept telling to try and focus. I wanted to scream "I'm trying!" I never dreamed it would have left my eye so droopy for so many days. I just keep hoping it will get better each day.

Joan marie,
What an incredible story you have! I can't imagine how scared you must have been. I am so glad to hear most of your symptoms are gone. That is wonderful! I am hoping I can say that someday soon!

Erin,
I am surprised too. I don't know if they will change it after the EMG testing or not.

Gosh Erin I just can't imagine a month in bed. You have certainly had a long road but you are such an inspiration and I know your experince has helped so many others including myself.

No I'm not on pred or anything else. I think it is going to be a month or so before they start me on Mestinon. They want to wait until all the tests are done. Is that standard procedure? I guess I assumed that once i went on wed i would start medication. I have not felt bad the last couple of days. I have had more energy than I've had for several weeks.

On another note, did you get the email I sent you last night? My computer is acting wierd and I think I may be losing things into cyber space. Part of it may be the user but I think the computer is partly to blame LOL!
Kendra

I DID get your PM - I'm going to respond to it now!

Hang in there, sweetie!

AS for the mestinon, I was not given it IMMEDIATELY, it took a few days, but for ME it wasn't enough @ that point...........

If you EVER feel any major weakness or problems with breathing or swallowing, please call 911 IMMEDIATELY!

LOve,
Erin

Hi, Kendra. It's sort of shocking to realize how bad you can get so quickly with MG. I remember my first lesson on it and it really surprised me. The more you do, the worse MG gets. Kind of like the Richter scale for earthquakes! It can get exponentially worse the more you do. But, everyone is different and some people recover quickly while others don't for days.

Like Erin said, if you have breathing problems, swallowing problems or get overall weaker, you need to go to the ER. When MG gets worse, there's no telling how fast you can get even more worse. But don't panic! If you are getting worse but not to the point of not breathing well, you should call your neuro and get their advice. Always keep them in the loop.

I'm sorry you got so much worse after the eye tests. One thing you should know about the drops that eye doctors use is that they contain Atropine. It has the opposite effect of Mestinon and can make you weaker. I always get weaker afterwards, and not only my eye area muscles. It can drip into your throat and cause your swallowing muscles to be weak. It can also cause generalized weakness. So if they used drops, that may be another reason why your eyes were so bad.

I understand the doctors not wanting to treat you yet. In the meantime, stay out of the heat and take it easy.

I hope that helps. And I hope you get answers soon.

Annie

Annie,
I had NO idea the drops could do that and yes they did use them!!! I noticed my eyes stay dialated alot longer than they used to also. I am so glad to know this. I have really been worried something was going horribly wrong. Today I am so weak and tired and have a horrible headache that even sleeping won't get rid of. I think it is from constantly tilting my head back so I can see. Luckily I don't have to drive anymore today so I'm just going to stay home and take it easy. We are having nice cool weather here in Mo. It got down to 55* last night and today is only around 70* It has been wonderful! I have been sitting on the patio enjoying the cooler temps! Thanks so much for the info and if I ever notice breathing or swallowing problems I will get to the ER immediately!
Kendra