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kisekis

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  1. Yeah i keep contacting them Thank you for your encouragement! i found a few neurologist who can do telehealth but i dont know which one is the best choice also when i look up for their information the reputation not as goos as Dr. Blitshteyn
  2. yeah and im not the only one who cant contact the clinic on the dysautonomiaclinic facebook page some people also question that. do you or anyone maybe know why/what happened? Thank you for the list. πŸ‘ Although i dont know, which neurologist accept telehealth.....? 😡 but ill try to look into it.☺️
  3. Anybody knows neurologist who has expertise in POTS&willing to do teleconsultation? (other than Dr. Blitshteyn, cause shes uncontactable now) Thank you for anyone who reply.
  4. Anyone knows/have experience with R-R interval test? (EMG neurology) Did anyone have an abnormal result? normal result? Because i did SSR test but the result is normal eventhough my hands have excessive sweating. Doctor said it usually come up abnormal for people who have trouble sweating not the other way around.
  5. So are you saying they arent telling the truth? Cause in their website they said it works, theyre experienced in it and can/have helped many patient, also from online consultation and give record review and detailed report. Thats why im asking if its worth it/trusted and wont have issue. For more than 16 years im struggling to find doctor who can help, still no 1 acknowledge pots, mcas, eds, etc in my country(no matter how hard i try to tell them)also hard to find around near my country. ive been tortured and lost my life since 11 years old. And now im almost at dead end. So im desperate. I lost ideas and things are getting worse&worse eventhough i tried everything, my best. What im trying is at least find knowledgeable/experienced specialist who can give advice/guidance through my health history&med record. What seem to be the cause, what method should i pursue, reference, recommendation for doctor, etc.
  6. Im sorry for creating this thread i hope its ok. but i really need to find info if theres other people have taken online consultation with dysautonomia clinic? http://www.dysautonomiaclinic.com/ It seems reputable though. And said it works&theyre experienced in it. but i dont really know much since im in different continent, im kind of worried if theres an issue with procedure/payment, i wouldnt know what to do. Cause its pretty high for my budget. So i want to make sure i make the right sacrifice. Pm ing me to give inputs would be ok too. Thank you.
  7. I see. What does it mean by "treating gi symptoms?" As in drugs, diets? I have gi symptoms(and bad diet)since a child&before i got sick. Its hard figuring out what exactly is the problem. And its more problematic if its from multiple causes. Also some food do have stimulant chemicals in it. To me theres food which cause small/little issue but many food cause severe issue. I have GI issue, autonomic issue, sensitivity/immunity issue. So i cant figure out which one cause it.
  8. Has anyone ever asked this to doctor? Is this dysautonomia issue or mcas or vagus nerve or digestive? It seems like people with pots/cfs often experience this? Im puzzled.
  9. What safety precaution due to surgery? And anesthesia? Did you get issue? @p8dthank you so much for the link. ive been searching by keywords pots doctor but couldnt find. I have emailed them but havent got any reply though
  10. hello and thanks for the info. I didnt know about the uk pots forum i try to google it but didnt find? I couldnt find the fb group. Only this https://m.facebook.com/yorkcardiologist/ ? Anyway. Im still confused if hes really expertise/high skill in pots issue?(and possibly eds, mcas which seem to be connected)im cornered&run out of ideas/choices though. Which leaves me desperate. Do you have endometriosis and autoimmune? Thats the diagnosis i have too do you know about endometriosis cyst? Ive been trying to find a way to decrease it without surgery
  11. But i thought mcas symptoms is similiar to allergic? Also i dont know how to check for it. Yes i actually read about amine. I still try to figure out how to check for it.(try to eat it one by one and see which cause issue)i only check for MSG which i got bad reaction after i ingest it.(maybe due to glutamate or other thing?) Also got reaction from sugar/high carb, fatty food.
  12. No actually i dont really like fish. I like pastry, pasta, ice cream, etc. I used to eat a lot of them. But i avoid it when i realized it cause issue(sometimes i still cheat though but before i tested positive for autoimmune)
  13. I agree what confused me is it doesnt seem like typical allergy but i feel poisoned. I can clearly tell my body is acting up. How long it usually happen after exposure to food? And how long it last? Anyway since i have autoimmune and join the autoimmune community. People who got AI also got symptoms from eating some food. So i think it could be connected. Or maybe the hypersensitive nervous system.
  14. I have this too. Is this autonomic related issue? I remember reading about vagal modulation? Or something like that? It seems my heart is hyper sensitive. Can act out from minimal exertion. My muscle also hypersensitive i wonder if it connected... I also got cold sweaty hands and feet when i feel sick.
  15. That was a surprise cause i read the researchers and top hospital come from US. But i heard about the expensive cost My current diagnosis are only. Autoimmune, PAC, sinus tachycardia, chronic tetany, endometriosis(my stomach is swollen and they found big cyst ) I have acid reflux too&many gut issues but i havent done endoscopy.(yet) Allergy diagnosis from blood&skin prick. Sleep apnea, havent got diagnosis cause mine come randomly so its hard to diagnose. Anyway, the problem is the doctor doesnt acknowledge pots, mcas, eds, etc. Since its still not very popular worldwide.
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