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Everything posted by Ernie

  1. Hi, I have injectable once every 4 weeks and it helps with being tired all the time. No side effect so far.
  2. Hi, The sodium can make a difference. Fasting from 9:00 p.m. is enough especially if the TTT is at noon.
  3. Hi, Your numbers don't reflext POTS at that time. You might redo a TTT on a day when you are more symptomatic.
  4. Hi, Thanks for sharing. Very interesting article.
  5. Hi, I am sorry for your loss.
  6. Hi Dani, Some of doctors to help people, others are there for the money and others for their ego.
  7. Hi Bren, It's nice to know that Dr Morillo will do the TTT, the interpretation and prescribe some medication on the same trip now. I might go with my son knowing that. He is a bit like the Canadian version of Dr Grubb. I'll know by the end of the week what I will do next. I called in July and I left a message on their answering machine to get an appointment but they never returned the call. It might have been lost somewhere so I'll have to call back. I might need another referal for myself because it has been more than 5 years that I have seen him.
  8. Hi Shoegal, I forgot to say that I went back to Dr S with my son after 10 years of not seeing him because my son is 14 years old. We have gone to all the pediatricians in Montreal and none of them know POTS and NCS and even though I have brought them research on POTS and NCS none of them want to diagnose him and treat him. It has been a year of going to doctors almost every week now. So the specialists said to go to Dr S. I accepted because it is kind of my last choice in Montreal. My treating doctors don't accept minors. I just pretented that I had never seen him so that I would be nice with him.
  9. Hi Shoegal, He sent a report to my Primary doctor writing black on white that I had Munchaussen and Hysterical Syncope. Since all the specialists in Montreal look up to him and call him for advice I was put on black list and no doctor would take me as a patient. You know when you are diagnosed with Munchaussen it means that you poison yourself or hurt yourself on purpuse to get attention. That's why I could not have any doctor in Montreal. I had to go to the U.S. to get my diagnosis - I saw Dr Grubb and then Dr Goldstein.
  10. Hi Bren, I live in Montreal. I have seen Dr Morillo in Hamilton which is an excellent doctor. I might end up there with my son. I have a referral for him but I am waiting after the TTT on Monday to take an appointment with Dr Morillo because it is a 10 hours drive one way for us and we have to sleep over. Plus we have to go at least 3 time because he does not schedule the TTT the first visit and does not give the result the day you do the TTT. I am determined to get his diagnosis one way or another.
  11. Hi, Thanks for your prompt support. He is seeing an internal medicine doctor on Monday and he will have another TTT. That one diagnosed me with psychosomatic syncope 10 years ago so I hope that my son will get a better diagnosis. I will call tomorrow Dr S's secretary and ask her to tell Dr S to forget about sending the refering doctor his opinion. He has such a big ego that I am sure he will send it anyway. I will give it a try. Who knows.
  12. Hi everyone, I just went with my son to see the number 1 Canadian Syncope Neurologist. My son has already been diagnosed with POTS and NCS on June 22nd and the other specialist did not write the diagnosis down yet so we need the diagnosis written down to help with school, etc.. Can you imagine that the Dr asked my son to sit, took his BP and HR and then asked him to stand for 3 minutes took his BP and HR and said that he did not have POTS. I was in shock. You are suppose to lie down for 10 minutes take the vitals and then stand up, take the vitals wait 2-3 minutes take the vitals until 10 minutes. Some of you might remember that he is the one who diagnosed me with Munchaussen 10 years ago. I thought that after 10 years he would be more competent as more literature has been published but he is the same old ***. He has no social skills at all. I wanted to show him the TTT and he said to give it to the secretary and he would take a look at it later on. I said no. If he does not have the time to look at it now, we are not important enough as his patients to come back to him. The secretary said that I could not refuse. I told her that I just said "no" and that was my final word. We just left and she was dumbfounded. I did not want him to say that the TTT was negative because he is so incompetent. I prefer to go and see someone who I trust better. I left the hospital so upset and angry of having lost my time. He said that he will write the refering doctor that he does not have POTS. (Has soon as my son stands his HR goes from 60 to 120 and it stays in the 120 or increase for the whole 10 minutes :wacko: .)
  13. Hi Julie, I am sorry your husband had an accident. I hope he will get back to normal again. What a busy summer.
  14. Yes, and to other of my family members.
  15. Hi Naomi, I was tested for the NET mutation and that's not the mutation that we have. Ours is unknown. I hope that one day researchers will find out.
  16. Hi Naomi, Thanks for making the corrections. There are 31 members in my family who are presently diagnosed. They are all Canadians both males and females. The youngest is 14 years old and the oldest is 82 years old. We have 4 living generations caucatians. We don't know the etiology.
  17. Hi Naomi, Thanks for making the corrections. It was also a good idea to enable many answers in the diagnosis as I have more than one.
  18. Hi, You did not mention 'genetic' as a trigger (it's not the trigger but it'a the reason).
  19. Hi, I am also surprised that you are not aware that Canada and Mexico are also in North America. North America is not only USA. You have 7 different categories for US but your north and sourth neighbours are missing. Only 5 categories for the rest of the world. Yours stats are skewed.
  20. Hi, In my family we get old. Some with POTS and NCS died in their 70s or 80s. We have 6 generations so far. I think the oldest was 84 years old with many other severe illnesses.
  21. Hi Jana, I had a couple to get diagnosed and all the other are for research purpose. I still participate in research to help my peers. I also did more than 15 catecholamine tests.
  22. Hi, I had more than 13 TTT and they were all terrible. It took me about 5 days to recuperate from each one.
  23. Thanks Allene, His father told me that he possibly will change psychiatrist if the guy and not more open minded. We have many choices here so I will look around.
  24. Hi, I have my friends, my family, dinet and professional support.
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