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Ernie

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About Ernie

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  • Gender
    Female
  • Interests
    Researching, puzzles

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5,553 profile views
  1. Thanks for posting the link. Most of the time I don't get those channels so it is nice to be able to see what you are talking about.
  2. Thank you all my dear friends for your advice and support. I went to see my own general practicionner and he accepted to prescribe my son Midodrine and Nadolol. So we are going to start with that. I am shocked to read that so many of you were(are) mistreated also. My heart goes to all of you. I wonder how many years it will take before we are officially recognized. At one point epileptic were believed to be possessed by the demon. Nowadays doctors know that it's an electrical imbalance in the brain. One day it will be our turn to be recognized.
  3. Yes, there are 31 members in my family who have been diagnosted because they were tested positive for POTS and some have NCS also. There are minimally 80 of us with the disorder but since I am the one coordinating the care of everyone, I don't have time to take in all the members. I have had to refuse some because of time constraint. I asked a few members to help me in my job but nobody is interested. It's a lot of work. I wonder if someone will be there to replace me when I won't be able to fulfill that "job" anymore.
  4. I will pretend that I am rich, intelligent, young, beautiful and most importantly very healthy. I am going to the next Olympics as a gymnast and a weight lifter!!! I will win the Gold Medal in both fields.
  5. We went to see a nephrologist, an endocrinologist, a cardiologist, 2 neurologists and the adolescence specialist who told us to push to pretend to be normal and everything will turn out fine.
  6. Hi everyone, I have been going to one of the Montreal Children's Hospital for a year to get my son diagnosed with POTS. He was diagnosed in 2004 by Dr Goldstein from NIH. Then he was diagnosed in Canada from another researcher on June 22, 2011 and then in Sept 2011. The problem is that none of those researchers wrote the diagnoses down. So finally we went to see Dr Stewart in NY who diagnosed him and wrote a report and treatment plan in October 2011. So now I am trying to find a doctor in Montreal who will prescribe the medication that Dr Stewart has suggested. None of the 5 specialists we have seen want to do it because they don't know our disorder. But the best statement I got was last Thursday when the specialist told my son that he was not sick, that his blood pooling in his legs was normal, that it was normal that his legs turn purple when he stands for 2-3 minutes and that I was putting bad ideas in his mind and that I should push him to have the life of a normal teenager. There are 31 members of my family who are diagnosed presently, and it's the first time in 8 years that one of us has been told that it's a boggus diagnosis and that it is normal to have purple leg when we stand up. He also has sleep apnea diagnosed by 2 sleep studies. The doctor told me to encourage my son to wear his CPAP. I told her that the Sleep Apnea was also imaginary. She said why is that so. I said: "One diagnosis is worth the other one." If my son is healty then he does not have any health issue and the sleep apnea is also a boggus diagnosis. You should have seen her face. She said: "No, no, they did the sleep study and it confimed the diagnosis." So I told her that it's not because she does not know a disorder that it does not exist. Then she told me that she did not have any medication to prescribe him. I told her that I have my list which could work on him. She asked me if it really worked. I told her that without it I faint every time I stand. She said that my son did not need any meds as he is able to function. Ah really! He can't stand 3 minutes without fealing he is going to pass out and if he continues to stand he will faint. I doubt that this is normal! So as we were leaving her, she asked me not to faint in her office! I told her that I would wait until I am outside the building so that the hospital would not be responsible for my body! (My goodness, I can't believe a doctor asked me not to faint in her office!) My son was really upset and discouraged that she did not believe he had symptoms and that he is not worth having medication to help him function. Thanks to reading my venting
  7. Hi, I was born with POTS. From 18-25 years old I was swimming 2 miles a day. Then later in my twenties I was doing cardio and weights for an hour 3 times a week. Two days before turning completely disabled I danced for 6 hours straight.
  8. Hi, I had a colorful life so far. What I find most difficult is facing death on a regular basis. For example, in 2007, I almost died twice at the hospital because the doctors gave me the wrong medication. Other time, it's because I faint on the street and cars are almost running over me. So, I take my life one day at a time, appreciating the fact that I am still alive and that I have a tolerable life.
  9. Hi, I was born with it, as well as 31 other diagnosed members of my family. Most of us are able to work. I crashed 10 years ago and was not able to work since. So far, in my family there are 5 disabled due to POTS.
  10. Hi, Before crashing I used to tread myself with homeopathy for everything. Now I need regular medication for a lot of medical problems but I still take homeopathy for some, ie allergies, flu.
  11. Hi, I have my portable chair and I sit ASAP. I don't care if people look at me. Most of the time they say that I am smart to have a portable chair. I thank them for their comment.
  12. Hi Julie, I did not think about the reliability of the supplier. One thing I check when I purchase is the percentage of positive feedback. If it's not close to 100% I don't buy from them. I'll ask more questions to the company. Thanks
  13. Hi Julie, Thanks for your answer. The company told me that I would have to put in 10 hours a week on my computer. That is reasonable for me. I would not be involved with the shipping, so that is a big relief for me. I am glad that you told me that I have to answer questions because it means that I have to sell articles that I know.
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