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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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04-15-2009, 04:36 PM | #1 | |||
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Hey there! How are you? Are you OK? It sounds like you have been through hell and back with MG........I am so sorry to hear that!
I see a hema every 2 weeks - my blood has always been a little "off" - no idea why! I have also had every test known to man EXCEPT for the stress test (thankfully) - I have (they say) a great circulatory system, great vascular system, etc, but I do have the hemachromatosis GENE - whereas my sis has the opposite problem (can't remember the name of it right now - brain fart)........ MY main concern is that when all of this crap started, it started with wicked headaches and nosebleeds......after my ill fated trip out of the country......it was awful, to put it mildly.....that was right b/4 my first real crisis...... I see my neuro in a few days - thankfully he will have them run the gamut on me - every time I have a new problem they test me for EVERYTHING - in that respect I am very, very lucky b/c he does listen! AMEN for that! I do know that I have terrible sinus problems and every dr has told me I need to have them drained in order to feel better- I am just a little gun shy after my last surgery and I hate the hospital so much! It still scares me even though I am there every month for more IV IG.......You see, I grew up in the hospital.....my Gram was always very ill, so we were there all the time..... Thank you for letting me vent! I will ask Dr. I about all this new crap and get alll of my testing done within the next couple of days! If you DO want to talk about what has been going on, please email me @ erinhermes@hotmail.com.......... Big, big hugs! Erin Quote:
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Erin . |
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