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Ht888

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  1. I will post here after my trip if there is any good info.
  2. I suspect all Russia since I'm technically not from Russia, along with some of my friends that have similar symptoms. There is a lot of cross population of Russians in those neighboring countries, some more, some less. I guess it has something to do with that geographic region and based on some research northern parts have higher incesence.
  3. Angela, can you please clarify your questions? Not sure what you mean
  4. Altruism, from my research it looks like Russians attribute dysatonomia to this dysplasia of connective tissue. This article is/was in Russian and you can read it with Google translator if you are interested. It is mostly about the connective tissue problems, but they say elsewhere that patients with the undifferentiated type first present in adulthood to a neurologist with dysatonomia. http://www.mif-ua.com/archive/article/30446 YolaInBlue, I will let you know if I find a good doctor/dysatonomia treatments in St. Petersburg.
  5. Angela, I'm quite impressed with your Russian ) My daughter is 13, she was born in the US, but spent 5 summers with my parents in Russia. She can speak and understand Russian maybe 60%, but can't write. I'm actually considering moving back there if my trip in March shows that they have a good care system for these conditions. So far info on the Internet looks very good, especially their programs for kids. I'm seeing one of their top geneticists for this dysplasia and want to get a referal to a neurologist for dysatonomia while we there.
  6. Hi, I'm Russian and yes, вегето-сосудистая дистноия is dysatonomia; they also call it нейро-циркулярная дистноия. I've been doing a lot of research on Russian Internet in the past two months and actually flying out to St. Petersburg in March to see a Russian specialist. The interesting thing is that it is estimated that up to 30% of Russian population have dysatonomia. It's a very common condition in Russia, however POTS is nor specifically spelled out. I also found out that Russians are attributing dysatonomia to something called dysplasia of connective tissue. They have identified two types: differentiated dysplasia of connective tissue (EDS, Marfan's) and undifferentiated type. They think that 25-30% of adult population have the undifferentiated type. They have criterias and algorithms for diagnoses, including lab work, plus different treatment plans. And joint hypermobility or pain is not considered as a main criteria for diagnoses. They look at many things, like body proportions, ears, length of fingers, internal organs abnormalities, varicose veins. This information certainly explains why the geneticist that I saw said that I have "atypical" EDS. Plus I could never understand how my husband (also from Russia) can have the same symptoms. I'm really hoping that they can help my family in Russia. Believe it or not, they have sanatoriums where you can go for 2-4 weeks to get treated for dysatonomia and this dysplasia. They are also very much into the preventative measures for kids who are at risk (i.e. parents with dysplasia/dysatonomia). I'm very excited about this info and will share if its helpful.
  7. Sorry, learning how to use a quote... My daughter is almost 13. She has the most trouble gaining weight, very, very skinny and has very frequent strep infections and viruses. We got back from a doctor's appointment yesterday and learned that she is gluten intolerant and it has been haulting her growth. She also has very high thyroid antibodies and tons of environmental allergies. Thank you for the info, I will make an appointment with the immunologist.
  8. Hi guys, thanks! Kitt, I'm glad that you had experienced an authentic reflexology. I tried one at the Chinese place here and it was nothing what you describe. Regarding Neural therapy, I'm not sure... I'd like to find some confirmation that it can help with POTS first. I doubt that insurance will cover it since it's not a traditional treatment.
  9. Hi, I'm sorry to hear that her test is abnormal, it's always so hard when your kids are involved. I am suspecting that my daughter has problems with her immune system too. Can you please share what lab does this test and what kind of doctor orders this test? Thank you.
  10. Hi everyone! This is my first post although I've been reading this forum for quite some time now. I have POTS and EDS, got sick 12 months ago. For my POTS I take two drugs, desmopressin and propranalol, and will be switching to Ivabradine once it arrives from the online pharmacy. I also did an Atlas Orthogonal adjustment to my neck and it was extremely helpful for about 3 months, almost symptom free. Back in a flare now I learned about Neural Therapy today from a doctor. This therapy relates to ANS dysfunction and I was wondering if anyone ever heard about it? This is not a mainstream treatment and the best doctor for this is in Canada (as I was told). Here is his website. http://rfkidd.com/ntherapy.htm I would be very interested to hear your thoughts. And I want to sincerely thank EVERYONE on this forum -- you are the most knowledgeable, intelligent and kind group of people. I can't tell you how many times I printed articles and research papers from here for my doctor. Thank you!!
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