new here
 

Hi, everyone. I just wanted to jump in--I'm happy to find this forum.

I'm waiting for a diagnosis. My first symptoms were just balance troubles, which puzzled the doctors. Now I'm getting more typical mg symptoms--weakness in my arms, legs, and neck muscles, especially in the late afternoon. Can't talk on the phone then, because it's hard to hold up my arm--that sort of thing.

Psychologically, I feel better now that I've decided I know what's going on! If the tests come back negative, I will be a wreck again. I am wanting to move from the "what could this be?" to the "dealing with it" stage, though I do know that there's always something new to learn to deal with...I know I'm just at the beginning.

Yesterday I was sitting reading, and at supper time I got up to go to the table and found I was too "tilty" to walk. I called my husband to help me, and the kids--my three little boys and their friend--heard me say "It's the tilty time of the day" as we came into the living room. So they all stuck out their arms and tilted around, saying "Whoooooaaaa." They totally cracked me up. It's not that they're unsympathetic--it's just that they're too young to carry around the burden of worry.

Welcome, I am glad you found us. I hope you take the time to read the posts and you will learn we all still have questions, even me, and I have been dx'ed for 19 years :)

We all learn from each other. Do you have double vision? Have they done the tensilon shot test? {to me thats the best test}

I know there are many days when I question if I have MG {although I know I do} because sometimes my symptoms are different, so it's a crap shoot day to day, LOL

Please keep us updated and feel free to ask any questions you may have.

Hi and welcome,

I'm glad you found us.
I hope you get a diagnosis really soon, its the waiting that is the hardest.
Everyone here is very helpful and informative.
If you need any help finding your way around, just ask, we'll all be happy to help.
Look forward to seeing you around some more
take care
Kate

Welcome Stellatum!

Know exactly what you mean. The most agonizing / frustrating part is not having a dx. My blood tests were antibody negative and SFMG was borderline. Luckily, my neuro is experienced with MG and had no problem with a clinical dx.

Keep us posted...and hope your test results are, at least, definitive!!

Sue

thanks
 

Thanks, everyone, for the welcome. I didn't want to complain about how hard it is to wait for a diagnosis, because I know that a lot of you are suffering harder stuff--my symptoms are still rather mild--but I see that you all understand.

My eyes aren't affected, at least not yet. I know that's unusual. I'm going for an EMG on Wednesday, and I hope between that and the antibody test, I'll get a diagnosis. If not, I guess I'll just have to wait for things to get worse before I can get treated. It is frustrating. I'm still trying to get used to the idea of all these time lags...making appointments...waiting for tests...waiting for test results...Yup, welcome to your world, right?

Meanwhile, I much appreciate all the information here, and it really cheers me to connect with other people who understand. I wish you all well in your continuing fight, and I'll be in touch.

new here
 

Hi Stellatum,
Welcome!!! I know you'll love it here. I hope you have a definite diagnosis soon. I know exactly what you mean about just wanting to know what's going on. The waiting is horrible.
Kendra