Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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unsure81 06/09/2013

Hi everyone.... I feel a bit cheeky posting this as you all are having your own struggles but this time tomorrow I will be travelling 90 miles to see a neuromuscular specislist after 9 years of basically being told there is nothing wrong with me. As most of you know - I have facial/eyelid droop intermittent walking/muscle/breathing difficulties and now some swallowing problems!

I have to say that I am just dreading it and not really expecting anything from him because my last (and only!) neuro's determination that there is no evidence of disease. I feel dismissed and kinda on trial to prove myself :(

If anyone has any advice that may help I would love to hear it :) but I would also be so grateful for any luck or prayers you might send my way over the next 24hrs! Like I said, I feel cheeky asking knowing what you are all going through but I feel like my options are running out fast for the answers (and help) I need.

Thanks everyone - you posts and discussions are a big comfort and support.x

krbunn 06/09/2013

In our prayers. --Kerry

carolela 06/09/2013

Good luck to you! I hope you get some answers.

deleted_user 06/09/2013

Good Luck!

Cabbage7 06/09/2013

I don't know what relationship you have with God, but I recite the 23rd. Psalm in the bible. I will keep you in my prayers. Cabbage7

deleted_user 06/09/2013

Besides the luck and prayers, you also need to bring 2 lists. On the first list put the symptoms you are having. On the second put questions you have. You don't want to leave his office thinking "Oh, I forgot to tell him this". Someone here once wrote that it is a good idea to bring 2 copies and give the second to the doc so he can follow along. I haven't done that but I can see where it would be helpful. If you do, keep it short so it will be read. Doc don't have time for 3 or more pages.
Mary

annkemp 06/09/2013

put yourself first.
This will be your day and your time.

If you believe you have MG tell him and as others said, make your list ahead of time , and tell him why you think you have MG.
Ann

newmugg 06/09/2013

Good luck. Explain your symptoms well. Maybe go up and down some stairs right before your appt:-) look up at those fluorescent lights before neuro comes in. Meaning, maybe get some of those symptoms prominately showing.
Let us know how it goes.

Barbel 06/09/2013

When I went for my tests at the specialist, I got up at 4:00 so I wld reach my peak MG time. I kept moving all morning and took a hot shower and didn't drink coffee. I drank hot decafe instead. I took a blanket w me so I wld be warm for my tests. I did get a dx. Good luck. I will be praying for you. Please keep us posted.

Tim62 06/09/2013

Good luck, and please let us know how it goes.

lojos66 06/10/2013

I cannot add any thing more than the others have said except that I have been through exactly what you are going through and got a diagnosis of some sort just recently after 3 years.
You know what is happening to your body and far be it from them to tell you there is nothing wrong.
Make a list of all the activities you CAN"T do now and wish to do and take that with you. persevere for your quest in a diagnosis.
I will be thinking of you tomorrow.
Lorraine

lindsayamaral 06/10/2013

If any symptoms happen before the appt. record it on your cell phone! I hope and pray for answers so you can start medications and attacking the enemy!

deleted_user 06/10/2013

Best to you for answers. And treatment.

Luvspringers 06/10/2013

My thoughts and prayers are with you! It is an exhausting process , especially for the weak and " it's all in your head"! I think the two lists is a great idea. As a matter of fact, keeping a dated log is another good idea. It shows the day to day struggles. One doctor said to me, " I cannot diagnose you because your symptoms are vague. That is RIGHT NOW."
As you know, it can turn on a dime. If you don't get an answer, keep a log! Please keep us I informed!!

CarlyMichelle 06/10/2013

Let me encourage you NOT to give up! It took 4 neurologists, a trip to Mayo Clinic, a muscle biopsy and more to get to an MG diagnosis.
Just when I'd given up hope, new symptoms came that were dead ringers for MG. FInally, my neuro treated me for MG. Voila! I am responding well to Mestinon and the diagnois is a done deal.
Don't give up no matter what this trip brings. YOU know your own body best. Some MD somewhere will be able to connect the dots and help you!

Press on and keep us posted.
Praying all goes well.
Carly

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