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Everything posted by Ernie

  1. Hi, I only go to the ER when I am unconscious and I have no say or when I have something else than POTS and NCS.
  2. Hi, You can have blood pooling, vasodilation and normal BP.
  3. Dear Corina, I did not think that you thought I was the one diagnosed with schizophrenia. I was just clarifying the situation so that members could understand better the situation. Please don't worry about it. Love Ernie. Allene, I know my nephew does not sleep enough because he falls asleep on his desk at school. Also the epilepsy test he did is just the regular day time (I know I was in the room with him). I go with him to all his appointments. He told me that when he sleeps at my place he has a better quality of sleep and he is less tired. We went to see the sleep specialist and he is suppose to have a sleep study within the next 6 months. He snores a lot. Out of 31 members of my family diagnosed with POTS and NCS he is the only one diagnosed with schizophrenia. He is the only minor diagnosed also. I think that the doctors (they said they don't know dysautonomia) don't know what to do with him so they put him in the psych category. This can destroy his life, being stigmatazed has schizophrenic when you are not. So, as you know might I have to go on the front and fight again with the doctors to get a proper diagnosis. When those psychiatrists have you in their paws they want to keep you!
  4. My dear Friends, I am not the one diagnosed with schizophrenia but my 14 years old nephew. His school sent him to a neurologist who tested him for epilepsy and the result was negative. Then they sent him to a psychiatrist where he answered many questionnaires and they diagnosed schizophrenia and depression. I agree that he is depressed but not schizophrenic. I think I will follow your advise and have him see a GI specialist and add some nutrients. I have so much trouble presently finding a doctor who will treat him for POTS and NCS. The psychiatrist does not even believe that he has it. He thinks that it is all in his head. I went 30 years with that kind of treatment. This makes me so mad. His father is diagnosed but the mother is in complete denial and keeps telling doctors that he does not have the disorder. He has been diagnosed by my researcher on June 22nd but it is not written down yet because the researcher is waiting for the catecholamine and the blood volume tests.
  5. Hi, If you are a fainter, you could mention that the stress and being forced to sit still that long will strigger fainting episode and you will need to go to the hospital.
  6. Hi everyone, I have a few members in my family who are seeing things that are not there for a few seconds. They know that the thing is not real but one member just got diagnosed with schizophrenia and I think that the shrink is wrong. Are there some of you who are having some type of momentary visions of 1 second? You know how doctors are fast to put psychiatric diagnosis on us when they don't know what we have. Thanks for your help.
  7. Hi, I used it for 10 years with great result. Now I am too sick for it to work for the orthostatic part of my problem but I still use it for allergies, flu, cold, PMS and many other ailments.
  8. Hi, I think that we have to fight for ourself and I would not label that pushy. I would still be in my wheelchair if I had wait for doctors to do something.
  9. Hi, I have been sick all my life. I have been getting worse as I grow older but I rebound from beind bedridden to being able to walk again.
  10. Hi, Thank you for your insight. I will wait until he comes to my place to ask for the phone call.
  11. Hi, If you have been in a wheelchair for 7 years your leg muscles are atrophied and are not pumping well. It will be hard to see what is caused by deconditioning and something else.
  12. Hi, I have looked at the dynakids site and it looks very complicated to be accepted. They have to call home (they call only once) to check who he is, he has to sign a document, etc.. He lives part of the time at my place and part of the time with another parent. So, if they call and he is with the other parent, they won't be able to reach him. My question: Is it worth all the trouble to get him on dynakids? You can PM me if you prefer. Thanks
  13. My son was diagnosed by Dr Goldstein in 2004 when he was 5 years old but we don't have the written report. We don't have any report from any doctor and so far in Canada no doctor is willing to test him because in pediatry nobody has heard of the disorder. I am back to square one - having to teach them and find a working team for the children. I have the adult doctors thank God but in Canada adult doctors are not allowed to take care of chlldren and pediatric doctors are not allowed to take care of children. The endocrinologist said that he might ask the geneticist to do a study on our family. We will see how it goes.
  14. I had that test 4 times and they were all positive. 2 were done without medication and 2 are done with Eprex and I am still hypovolimic but less so.
  15. Hi, I went there twice in 2003 and it was my best experience as a research patient ever. Dr Goldstein is very competent, knowledgeable and kind. As far as I know there is no study for us right now.
  16. Thanks for your feedback. We went to see the endocrinologist today and they don't know anything about POTS and NCS and they want to start testing him with disorders he does not have. I told the endocrinologist that I don't mind that they eliminate other disorders but I would like them to do the test for our disorder. He said that he does not even know how to prescribe them. So I told him how to do them and at which hospital to do it and he still did not want to do it yet. So we have to start with the unimportant test first. My son was diagnosed at 5 years old by Dr Goldstein but we never got the report. So now we are stuck with the fact that he has a verbal diagnosis but no written proof. His school does not want to give accomodation before they get the report. We have been working on getting the written diagnosis since last October but nobody so far want to write it down because it's a rare medical disorder and nobody in pediatry knows about it.
  17. Hi everyone, My half son would like to see Dr Stewart and Dr Stewart is very interested in studying him. My question is: To those of you who went and did his research protocols did you get the test results on paper? Thanks
  18. Hi, I agree. A job description would be good and the job could be delegated to different people. I don't have the capacity to do it all but I coult do some things.
  19. Hi, I just can't believe how many challlenges Dr Grubb is having in his life. I often worry about him. I don't like my place but I would not want his either.
  20. My Beloved Friends, I am sorry if I let you believe that exercise is a miracle treatment. It is not in my case. I started exercising after finding the right medication combination, eating well and sleeping better. I still take many medications which I will have to take for the rest of my life. Unless researchers can modify my genes I am medication dependent to live and be able to walk. The doctors had to find the medications that solved all the problems that made me faint in the first place and with the meds on board I was able to start rehabilitation. Maybe some of you will be able to live a more normal life just exercising and without meds but that is not my case it and I don't think I will live to see that revolutionary medical treatment. Younger generations have a chance at it and I am happy for you guys and girls. I also accept the fact that I have to take meds every day to be able to function. I still can't work but I can do my grocery shopping when the store is not busy and I sit on my portable chair at the cashier. So my life as improved greatly from the days I spent 5 days a week at the hospital, played puzzles and watched TV all the time, fainted everytime I stood up, spent 4 days in the ER once a month and had no life whatsoever. I still have to be very careful about my triggers and stay close to a chair or a bed but now I can go out by myself which is so great. I love to be independent, be able to leave when I want and go where I want as long as it's not too far and not for too long. I have a great team of doctors who believe in me, know reasonably well my disorder and treat me well. What can I ask for more! I am at peace with myself and I live one day at a time and I enjoy the freedom and the renewed capacity that I have. I can't explain in words how great it feels to be out of a wheelchair and walk all by myself alone in a shopping center. I am still working on improving myself as I fell that my body has the capacity to do so. It is a long process and I have to be very patient. I know that you too can do it if you find the right combination of treatment plan. I keep thinking of you and hoping that you all improve and get a better quality of life. Love
  21. My Dear Friends, Thanks for replying to my post. I think of you every day even if I don't come here very often anymore. I was just told today by Realtor that I dream in color. I told him that I do dream in colour but my dreams do get fulfilled and if I dreamt in black and white I would already be dead and 6 feet under. Then I told him that he should dream in colour too. He stared at me so discouraged because he wanted me to accept a cut in the selling price of my house. Anyway, back to POTS, I think that we always have to keep our hope of improvement and try different treatment plans, either medications, exercise, food, alternative therapy, etc. Whatever helps you. Eleven years ago, the psychiatrist asked me what was my dream, if I could stand and walk again. I told him that I would like to be able to dance again. So that has been my focus for the past eleven years. So in 2007 after almost dying 3 times in the hospital and the doctors wanting to send me to a nursing home for the rest of my life I fought for my life and pleaded to be rehabilated. I went to rehab for a year. The exercises consisted on working my leg muscles laying flat on the floor by bits of 1 minutes at a time with resting periods. After a year I was able to exercise sitting and the 3rd year I started dancing. I took Depo Provera in 2007 for 1 year because I had endometriosis. At that time I was fainting every time I stood up or straining even on all meds because of the pain. Within 2 weeks of taking Depo Provera the syncopes decreased 80% because the pain was almost gone. Love
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