Quote:
Originally Posted by Geode
Hi, to start off, I'm not saying it's not MG, and I'm not saying it is this other idea, I have no clue. But what you are describing sounds a whole lot like a friend of mine who has MS. The pattern it sounds like you are describing, of relapsing and remitting, would fit with that diagnosis as well. I hope your doctors have at least done an MRI of the brain and C-spine before throwing out the psychogenic nonsense.
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Thank you Geode. I was tested for MS and ruled to not have it in 2012. I have since tried Mestinon and it works. I had tested negative for antibodies. Just recently saw this:
http://www.sciencedaily.com/releases...1111112641.htm
Which makes me wonder if this is the antibody I might have. Specialist left it at no dx, "just come in" when I have weakness.. but only on his one day per week that he sees patients, if he has time that day, and without any mestinon so he can test me using other means.. which would make it extremely difficult to get to see him as he is a five hour trip away. When I don't have the weakness, I test fine. I only had noticeable ptosis once, took a photo and sent it to my specialist but he said he can't go on anything based on a photo.
I had had a very severe reaction, prompting 5 months of severe disability, after some travel vaccines a few years ago. I have been quite well (fatigue, but mostly no weakness, hardly any mestinon) for the past year or so, but have been hired at a hospital where they are forcing employees to get the vaccine or wear a mask. Wearing a mask is very awkward in my position, and my manager has already stated, "well a mask wouldn't work." I really want this job, but really don't want to risk a relapse!
Anyone have any thoughts/experiences they want to share on this?
Thanks! Treena
