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i guess i’ll start. i have been suffering my whole life. i was very athletic (even as a girl in the 60’s) we would be playing football and i was very fast but once i stopped running the world would go dark like i was in a tunnel and then the lights would gradually come back on. age of 5 i had an intussusception. age of 12 found i had thorasic outlet syndrome.i have had scarlet fever 2x. have always felt like i was going to pass out if i ran to fast or just getting out of a chair/standing up. i just thought everyone was like this b/c i’ve always felt like this. i have always taking care of myself worked out watched what i ate. had 3 kids in 3 yrs was still a size 0. i wanted 8 kids so when i got preg. with #4 in 1991 was very very sick. could not hold my head up, was falling, legs would just buckle and down i would go. very very tired could not swallow my own spit. felt very bad one day called gp said to come to office- heart rate over 150 sometimes over 220. sent to cardiologist he said it was my thyroid, went to endo he said it was my heart. (was told multi nodular goiter, hasimotos thyroiditis.) sent to neurologist maybe myasthenia gravis, als(because of fastulations, severe leg cramps) no occular symptoms so then was told no mg. then was told i had to many kids and i was a woman so to bad. 1992 had seen a couple of neuro guys no help just b/c woman live with it. my gp started me on mestinon helped alot. went to ohio state in 1994 had single fiber emg was told it was positive then negative b/c the dr that did it was new and she did it wrong so it was negative. at osu they did a tilt test and they told me i had POTS but there was nothing they could do.1995 was in hopital 10 days was told i have IBS, supraventricular tachycardia, sjogren’s syndrome, ankylosing spondylitis, atrial fib, kidney stones, ruptured disc lower back, deep vein thrombosis 2x, heman liver, peripheral neuropathy, mild lung obstuction, hisutism (testostone levels high), can not control body temperature, can be sitting outside on a hot day doing nothing and will sweat like i’m running a marathon,chronic sinusitis, chest pain, head feels like a ballon with string tied aroud bottom then you squeeze it and all the pressure goes up, headaches, pain in eyes so bad i don’t want to move them, vision can change from moment to moment, now i’m hyperthyroid, nauseaed most of the time. i’m having mobility studies done on upper and lower gi. also, new tilt table and qsart at the cleveland clinic in july. tried to live with everything and take care of myself but things have been getting worse. rest really doesn’t help can not sleep well. thanks depression too. i have alot to live for i just would like to take care of myself so the dumb dr’s that do not have any idea stop saying dumb stuff. i’m very very tough!!
good morning, is this the reason i feel ok one minute and rotten the next. i can be sitting, standing, lying down or doing something. i can feel like i’m moving when i’m not?
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