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hi-i worked for a dentist for 10 yrs from 1978-88 and we would fix the amalgam and mercury in the palms of our hands. this mixture is your dental fillings. if the mercury would fall on the mixing ledge we would play with it. the girls before me all did this. one of the girls before me died in her early 20’s from cancer i don’t know anymore about her. now i know how dangerous mercury is and would never had touched it. we didn’t wear masks at that time either so breathing in the dust from fillings being remove might not have been that great.
i have hearing problems too, but i don’t know what it’s from! sometimes i can hear fine and other times i can’t hear anything. it’s funny b/c now my kids can look at me and tell i can’t hear them! maybe they want money and i now have selective hearing!!! Ha! Ha! i’ve noticed in large crowds with lots of noise i have a harder time hearing and so does my mom who appears to have eds (while other people in the same situation are not having problems). at 85 yrs young she can still do 4-5 things on the brighten scale. if i’m really tired i can not hear at all. i had ear exam and was perfectly normal i think the dr thought i was nuts for how well i could hear-i went for vertigo too and the rocks in my head were not out of whack. most of the time i don’t tell anyone whats going on b/c i even have a hard time believing the dumb things that go on in my amazing body!!!!???
hi, i have distal small fiber neuropathy in my feet, my pcp said it will go up my body. which it has been doing. it’s in my hands and fingers, sometimes i get the lighting bolt pains in my stomach and heart. oh and my face. is that what your talking about? i have a lot of heart problems too.
thank you both so much! i thought about taking him to my geneticist but just wasn’t sure on what to do. times like these just having a second opinion from you guys makes the world of differance.(saying what i’m thinking is great support.) thanks denise
hi, yes i would love help too. let me know what you want me to do next i’m having problems getting my mri of head only. thanks denise
hi! i have never had anything like what you described but i am having problems with pulse pressure (barbara explained it to me, i never knew there was such a thing) mine is really high
110!!!!-(sometimes). i have not yet asked the cardiologist if it means anything, if he says no i guess i’ll have to find a new cardio. i have been on mestinon for 21 years was told i possibly
had myasthenia gravis due to the response to mestinon. i haven’t seen a neurologist in 12 yrs and have been having more problems so went to a new one in april- she doesn’t think i have mg- saw a new cardiologist his response to me taking mestinon was it works in dysautonmia? i still have svt, pac’s, pvc’s and a-fib even with mestinon. i too am having problems with blood sugar they say i’m pre-diabetic, they actually e-mailed me this but didn’t tell me to do anything!
i do not know anything about mcas i have read a lot and sometimes things don’t sink in like they use to!!! blame it on the brain fog!!!hi! i just want you to know you are not alone-but right now i am going through the same things you are and it’s been my whole life with weird things and i have gotten worse 22 years ago! yesterday i spent the entire day reading old posts and felt better just reading them. i started out at the top and have read some of Barbara’s and “give my daughter the shot” they are great-you learn a lot. i still have a lot of reading to do. it helps you feel better that your not alone but it does not help dealing with dr’s. i just had a ttt done at the cleveland clinic and i think they did it wrong. but i am just a stupid patient! sometimes you read a topic and you have “ah ha” moments like dr diana talks about, don’t forget to watch the videos. i don’t know how to help you but i just want you to know i care about what your going through and i would help you if i could!!!
that was “give my daughter the shot’s”, post on 12-25-12 i just found it yesterday and she sounds just like what i’m going through and i just wondered what she has found out or done to get help.i really want to come to texas to see dr. diane but i have my own business and it’s hard to be away for even a day. i will probably have time in sept or oct to come to texas but i just wish i could find help so i could feel better before then. so, i’m on a king of hearts monitor and i read in the post on how when you bend over just to tie your shoe how the pressure in your head is so bad- i’ve been like that for as long as i can remember-so last night i did some experiment’s and my heart rate went up and i was able to catch with the monitor. bad thing is i took my hr before i bent over i was 63bpm when i bent over i went to 112 which i caught on the king of heart but not the slow rate. i am going to try catching my hr slow and then bend over to see if it goes high. an ah ha moment!!
great you guys tell me what you want me to do? i think my pulse pressure is high. this is reading @ cleveland clinic during ttt, they said ttt was normal; 173/65 equals pulse pressure of 108. i have all the readings from my tilt table that day.
i just did my blood pressure: left arm 150/80 82= pulse pressure of 70.
right arm seconds later: 131/76 85= pulse pressure of 55. isn’t that dumb?
my dr always takes my right arm b/c it’s closer to machine.
pulse pressure is high if over 40???
thanks denisehi i would love to find out more about coming to see you. i think i have javascript but couldn’t see your e-mail? or do i look some place else? i sent my symptom’s list, drug list and medical problem list to you yesterday if you haven’t received it let me know i’ll send it again.
hi, i saw the cardiologist yesterday. my husband and i liked him? i told him things and kind of acted dumb and he would finish my sentenced correctly (i was testing him to see if i thought he even knew anything about POTS or EDS). i’m on a 24 hr heart monitor, then have the king of hearts on for a month. i told him i found him from the dinet.org site for good dr. in your area and other patients said he was really good with patients that were told it was all in your head and he said i wish they would take me off that site because the cleveland clinic now is opening a neuro-electrophysical dept. for pots patients so he is taking his interests in another direction. so i said then you don’t want me and he said oh no it’s ok i can help you????? i started out in neurology at the cleveland clinic before i knew about dr diana or dinet.org or my local eds chapter, so why didn’t the neuro send me to the electrophysical dept which is part of her dept???? she told me after asking her 3 different questions that i need a cardiologist!! so i go to a cardiologist and he says what he said. i’ve been working on this since feb and i am not any farther than 20 yrs ago. i can not get anyone to give me diamox??
i have also been having alot of problems with my stomach-delayed gastric emptying, i get kidney stones but this was different so dr sent me for ct scan and they found spot an pancreas that can not be ruled out as neoplasm, fatty liver! i have never drank a drop of liquor in my whole life why would i have a fatty liver?? now more test i hate this. see this is what we go through. i have 4 kids that all show signs and i don’t even want to think about it. it sounds like i’m “debbie downer” today—sorry.hi i have been having problems my whole life and have been treated just like you. i have an apt today with a cardiologist thats suppose to be an expert on POTS. monday i see a geneticists for hypermobility eds. one of the best things i have found is a local support group for eds and ask the people at the meeting who their drs are, that have helped them the most and i’m going to see these drs and are hoping they will help me too. waiting is the worse thing b/c you feel so crappy and just want to feel better. depression is part of this. watch dr diana’s video on depression it really helped me. others don’t understand how hard it is for us just to go to the dr , they can and have treated us so badly-my depression might be really bad tomorrow. i can feel it today just by going to a new dr and lying everything on the line and he could treat me like it’s all in my head. i hope today is a good day! best of luck to you!
i have chest pain all the time magnesium seems to be helping. i also have supraventricular tachycardia, a-fib, average heart rate 96 bpm, pvc’s premature atrial beats, maximum heart rate 214. even with all this i was told i’m a woman and they do not have heart problems. i see a cardiologist at the cleveland clinic on the 18th of this month hope i get a better.
thank you for posting. i learn so much for you guys that have posted on my questions. i think about giving up but then someone answer’s my question and i want to fight again. all of my kids (i have 4) have signs of dysautonomia. my left leg has had a blood clot, varicose veins, purple straits and now when i do to much can swell to twice the size of the other leg. both swell left leg is just worse. Barbara what are you doing to get better? mine has been with me my whole life, just seems to be getting worse not better.
hi! can you have dysautonomia without pots? when i had my tilt table the girl doing the test said it took longer b/c my blood pressure was all over the place? i wasn’t moving or had moved in 10-15 minutes. twice during medical procedures my blood pressure went dangerously low. turning over in bed my heart rate on a heart monitor can go to over 180 and going up steps i can go over 214. my average heart rate is 95 bpm, i have been going into a-fib, have had supraventricular tychacardia forever. any thoughts? not pots? thanks for helping
