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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kaicee118 08/24/2010

Hi, I'm new to the boards. I'm not officially diagnosed with MG yet, despite some pretty definitive symptoms, but Thursday might be the day. I go to the neuro and I'm going to tell him that the Mestinon is alleviating my symptoms to some degree. Maybe only about 50%, but it's something. I really just want a diagnosis and then I can "move on" to the next phase (living as a person with myasthenia?).

Also, I've been trying physical therapy for the past few weeks, and while I can manage with the exercises, I don't feel that I'm gaining any strength. Just another piece of evidence, I think...

Thanks for listening:)
Karen

deleted_user 08/24/2010

Hi Karen,

Welcome! I'm in the same boat as you. My appointment is tomorrow. I've been praying so long for some answers and hope with everything in me that tomorrow's visit will finally provide them. I will pray for you as well. Please let us know what happens on Thursday!

Best wishes,
Lindie

kaicee118 08/24/2010

I'll absolutely pray for you too, Lindie. Come back on tomorrow and let us know how you make out. Good luck!

deleted_user 08/24/2010

I am waiting on a confirmation also. My appointment is next Thursday. I have had a ton of tests, and hopefully that will tell me something. I know I failed the nerve conduction test. I know this because the doc that did it told me he saw problems throughout my body, and the peroneal nerve in the leg he could not even get a response from.

I am beginning to wonder if I really have MG, just because of this test. I don't think it is what is normally seen in MG. He said the EMG was fine, but failed the nerve conduction. Said it could be one of many diseases that my neuro will have to test for.

deleted_user 08/25/2010

I will keep both of you in my prayers, I am a sero-negative that failed every test but was diagnosed after mestinon worked and then IVIG and prednisone. I fit the criteria to a T just not the tests. I think we account for more than the 25% documented mg'ers
Hugs,
jen

deleted_user 08/25/2010

Hello dear All :),
I'm being examined with the clues of skeletal myasthenia and similar things (and that what can be in the background). Today was the first day when my thighs REALLY felt like letting me down :P (my upper arms were the worst ever, before), by now I rather use my lower legs to move around which puts a lot of stress on poor 'guys', of course, but they are very willing :))

I just wanted to say a warm hi and send much love to very special people here :) - may God/Life bless you ~
(I still have one month or so to wait for a diagnosis and to get any medication. In the meantime I try to rest enough and use hiking poles for support when it's needed ;) My electro tests will be on the 16th. )

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