Hi, sorry this going to be a long post!
Still haven't been diagnosed yet, i'll be having a few tests done the end of February. Based on your experience do you think that i have MG?

It all started back in Feb 2008, my eye started drooping out of the blue on and off for a month, i was a bit worried but i put it down to wearing mascara! Then in November 2008 i was having a drink with a friend and i picked up my glass and had a drink but i couldn't swallow. I had to spit out the drink into my glass. It was ok after that and then on New Years night 2008 i had problems swallowing drinks all night. It stopped again after that, not completely, i couldn't drink hot drinks. Then in May 2009, i couldn't drink or eat anything for a week. I got really scared and i lost nearly a stone in weight. At this time i was so thirsty that i had to eat ice, for some reason i found it easy to eat the ice so i started putting a glass of water into the freezer and waiting until it got really cold and i also found it easier to swallow. At this time i had a Bariam swallow test and they found i had a small haitus hernia. The doctors put me on Zoton fastabs which neutralise acid. I've recently seen a neurologist and he said that a haitus hernia wouldn't cause swallowing problems. A few other things i have noticed is that i find it easier to eat and drink in the morning, for example i can drink a full cold glass of water in the morning and only one mouthful at night. When i eat a meal my neck feels like it is very tired and i have to flex my jaw to try to relieve it. The last year has been the hardest year of my life, from losing weight, to not being able to go out to eat or drink. If i have MG can you tell me is this the way my life will be for the rest of my life. Will i ever be able to eat out again? I just get really scared when i think that things will never change. Thanks for reading

Hey Nenah- Welcome!

All of the symptoms that you have described sound like MG to me, especially with things being better in the mornings than the evenings. Also, finding it easier to eat/drink cold things as opposed to warm/hot is also very familiar to me. I have trouble with my tongue and palate, and sometimes swallowing, and cold things are definately much easier to deal with. Heat in general can make me feel so weak that I feel like a big magnet, and the floor is a fridge! lol (bad example...lol)...

Rest assurred- you WILL be able to eat again! There have been times where I've been so weak, that it felt like I was just at the Dentist- only differene was that I could feel. I couldn't move my tongue, palate or swallow. But now I am doing much better. I can eat almost completely normally. MG flucuates, so you'll have good days, and still some bad days unfortunately. Some people experience a remission, and you could be one of those people too! Just know that even if you don't experience a drug-free remission, medications and life-style changes can help to keep your sx at bay enough so that you can lead a fairly normal life.

Take care!
Nicky

Hello and welcome!

What you wrote sounds like MG but your Neuro should be able to tell you for sure. I remember not being able to drink {fluid came out my nose}.

If you have MG remember that medications and lifestyle changes should help you to live a long and happy life. I am one of the few lucky ones who did have a complete, drug free remission {notice I used the past tense}

I am out of remission but I can eat and drink and live a normal life as long as I take it easy. When you feel weak.. REST... that is key to helping control your weakness.

Do you have double vision? A lot of us MGers have it. Has your neuro done a tenslon shot test? {I wish I could got those shots as treatment} LOL

Please feel free to ask us anything, as we all have different effects of MG but we all have MG in common.

Joanmarie

Welcome Nenah!

Glad you found this site!

From what you have described, there is a distinct possibility it could be MG. I would encourage you to read other posts here and the mda.org site. And know that sometimes MG can be hard to diagnose.

The fact that my strength can be dramatically different from one day to the next is something I think I will always struggle to accept!! But, for the most part, it is manageable and there are somethings that can really help - - though not quite cure.

Pls keep us posted on your journey to a diagnosis - - and always feel free to ask questions here. The members have a great deal of experience and knowledge which they willingly share.

Sue

Thanks for all your replys, it's great hearing from people with similar symptoms as me! When MG wasn't suspected it was very difficult trying to explain my swallowing problems to family and friends, they would say keep trying and one nurse told me to just go home and try and eat something!
Nicky it's great that you can eat normally again, i hope that's the way it will be for me.
Joanmarie i had a little double vision when my eye drooped, but not since, i haven't had the tenslon shot test yet,i'll be having that the end of february. I'll let you know how i get on!
Sue, thanks i'm so happy i found this site! Yeah my strength can be different day to day too. Today i'm having a bad day, i did have a good week before today, only could only manage a bowl of cereal and 2 biscuits
I'll keep ye all posted!!