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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | |||
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Or so it feels like it...
I was diagnosed with MG, then undiagnosed, now I just wanted to let you know that it is back! I have MG again, or at least tentatively. Of course, it could just be depression, as that came up about 6 times. But I never knew that being said made a person choke. Or be weak in fact... the bed part I understand. So he took blood for more *sensitive* tests and I am to go for all the swallowing tests and we shall see what comes of that. I am anti-body free, and the rest of my tests are weird, just have a positive SFEMG. I just have symptoms. But my eyes are fine. Every doc differs on what this is or even is this is neuro. Bad thing is that my pit tumor has decided to rear its ugly head again - my visual fields are impaired and my hormones have taken a dive. So I will be off for more for testing, MRIs and things - and I hope it can be resolved with surgery as I really really do not want radiation.
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Cyclical Pituitary Cushing's, Addison's via bilateral adrenalectomy, Growth Hormone Deficent, Migraines, Trigeminal Neuralgia, Hashimoto's, Hypothyroid, Myasthenia Gravis? |
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#2 | ||
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Oh, yuck. Sorry you're going through that kind of mess. Swallowing tests suck and I don't have all that much faith in the technicians who push to have you do them. I hope you have better luck with them than I did. Barium tastes horrible.
I hope everything works out for you. Fingers crossed. Cheers, Brian. |
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"Thanks for this!" says: | rumpled (03-12-2009) |
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#3 | |||
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Aww Rumpled, that just not fair!!!!
Good ol' depression, if they can't find a problem with a person, they put it down to depression!!! How frustrating that they all have different ideas as well, I know I sometimes go away from a visit thinking who do I believe!?!?! I'll be thinking of you, and hope you don't have to have radiation! Keep us up to date, and take care Kate
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Outside of a dog, a book is a man's best friend. Inside of a dog, it's too dark to read. Groucho Marx |
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"Thanks for this!" says: | rumpled (03-12-2009) |
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I had the barium ones - they were gross. I had a problem swallowing part of something, but then cleared it, so they put down normal. Great.
The next step now is the esophagal manomatotry one. The camera down the nose. All this takes forever as there is no local doc that performs this test.
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Cyclical Pituitary Cushing's, Addison's via bilateral adrenalectomy, Growth Hormone Deficent, Migraines, Trigeminal Neuralgia, Hashimoto's, Hypothyroid, Myasthenia Gravis? |
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Senior Member
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So sorry to hear you are going through all of this bs........just not right!
Camera down the nose is not fun and my "brilliant" ENT told me I was just fine - this is when I was down to 100 lbs cuz' I couldn't swallow.........what a joke! I think it is awful that WOMEN are always being dx'ed as "depressed" whenever we have our symptoms - I have told my doc for years that my energy level just wasn't right - I knew it wasn't, but they didn't believe me.......obviously the meds didn't work years ago - though they do help now with my anxiety......... I wish there was something I could do or say to help.....know that you are in all my prayers! ![]() ![]() Quote:
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Erin . |
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"Thanks for this!" says: | rumpled (03-13-2009) |
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#6 | ||
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Grand Magnate
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Rumpled, I just wanted to say that I'm sorry your docs don't know exactly what is going on. You have lots of endocrine problems and those can cause similar symptoms. I hope the tests go okay.
Annie |
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"Thanks for this!" says: | rumpled (03-13-2009) |
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