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kisekis

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Everything posted by kisekis

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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
  6. 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
  7. 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.
  8. 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)
  9. 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.
  10. 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.
  11. 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.
  12. I have this too and since >15 years ago no one can tell why ?? doctor here say its all in my head but it isnt. I have ecg handheld monitor and it shows clear difference. What symptoms you get from food though? I got heart palpitation issue really bad. But neurological too like adrenaline rush or something i feel jittery and sometimes stomach issues, sometimes sleepy. Pots symptoms. I experiment eating MSG 1/4 half a spoon yesterday and i get the attack too. And from sweet food, fatty food, cake bread, sweet potatoes, beans, etc. I dont get bad attack only from boiled vegetable so thats what i eat almost everyday but i hate it.
  13. I search your post from your reply to my thread. Ive had this my whole life.(its really bad) When i was a kid i also get episode of nose bleed. i also have immune problem, gut issue. So its all connected. Many of my family member have the issue too. I read that nose block issue can also come due to histamine/mcas issue and got issue. I seem to feel it too. When i eat something/something bad it exacerbate it.
  14. Thank you for replying. How come.. i thought US med system is the most advanced? I just realized i didnt explain it better and might cause a misunderstanding. I actually want to find specialist in pots, mcas, and other connected issues. Cause i have symptoms. But theres none here. Ive tried asking about pots here but no luck been to electrophysiologist. But they still couldnt find the cause. anyway, Ive check pots uk, dysautonomia international. But none listed here&it seems only doctor sanjay gupta is available for online consultation? I read about doctor nicholas gall, he posted thing that match my case. But he didnt seem to accept online consultation I might have to look it up more detail. Or email.
  15. Where do you live? And which diagnosis? (I just realized i didnt explain it better and it might cause a misunderstanding. I actually want to find specialist in pots, mcas, and other connected issues. But theres none here) My diagnosis of autoimmune is done through blood work(but its not pots antibody)cause theres only a few antibody available that can be tested.
  16. Thanks for replying. I know but im desperate&lost. i try to find at least advice/guidance if my med history seem to match with the disease/to other disease, what method i should pursue for diagnosis/any reference. I try to search in singapore and malaysia but still hard. I cant go too far away though. I dont know where? Also travelling will trigger/increase my issue so its risky. But if it will work ill try my best.
  17. Does anyone know any experience/knowledge of crowdmed(medical detective)or other doctor online consultation service? Im so desperate&lost cause the med system around me.(southeast asia. I need to find POTS, EDS, CFS, MCAS specialist. And connected diseases/syndromes, since i have symptoms. But theres none) Problem is, im very far from the US. If at least theres a credible specialist online consultation where i can get advice/reference it would be good.(through my med history, if it match with the syndromes, what method i should pursue) Or better if they can write to my doctor here so they will acknowledge. I read about cardiologist sanjay gupta but i dont know if hes experienced/expertise in it? My main issue is heart.(heart jumping out, hypersensitivity, intolerances) Diagnosis: autoimmune(jo1 positive, pcna borderline), PAC sinus tachycardia, chronic tetany, ibs,endometriosis(recently). Suspicion: eds, autonomic issue, mcas, hormonal, gut issues, apnea. I have many weird symptoms but didnt get detected/treated. Im disabled by it I get no help for >17 years, since around age 10-11(around first period) Ive read about online doctor consultation but still couldnt decide/find which credible&more suited for my case. Thanks to people who take the time to answer
  18. Interesting i got positive low ANA test. Ive seen other people with pots got low ANA test. If collagen issues caused stretchy, fragile skin, easy bruising. its likely possible it can caused stretchy blood vessel 😕
  19. How many of you have pots and also eds?(the new criteria not the old. hypermobility, joint pain, elastic skin, muscle issues, athropic scars, vision problems, spine, bleeding bruisings, tmj, etc which all caused by collagen issues eds) What im confused about its been taught that eds can caused pots(stretchy blood vessel) but now they said eds cant caused pots? The NHS website still write eds can cause pots but the official new criteria of EDS said no correlation between eds causing pots. so im confused??
  20. I know. everyone is different. maybe it depends on the condition, how severe it is, hows the blood volume(unfortunately cant test for it) I just wonder what dosage usually prescribe that i can try to see if i can improve with it. But it seems tricky. Didnt fluids get off the system in only some hours? If one get saline only a day a week wouldnt the remaining 5 days they revert back? I notice first you said 1 L over 2 hours and then 1 L over 6-8 hours. Doesnt that mean you still get 1L per day? (Sorry if i dont get this )
  21. I watch people make youtube videos to raise awarness of POTS, dysautonomia and i think its great that people do that. I wish there are people in my place that can do that/start a community but its hard to even find any If you can also make it, i think it will make a difference too to you and others I got sick when i start junior high a few years younger than you 15. Infection and puberty goes along with it/makes it worse, i dont know which. So its really sad that i have to lost so many things.
  22. Thanks for replyinf So must get infusion all day? 😮 Seems hard for me cause cant stay at hospital all day/for long and so often You said the first one didnt help you but its the normal standard recommended instruction for pots? Whats the general average total litre of saline per day? And how often/how many days have to get per week?
  23. Could someone help how much you should get a week for iv saline? I been reading about it but never tried regularly. I thought only try 1 bag once? But i think i remember i couldnt really notice improvements. I got it years ago cause my bp is a little low and after its still quite low too. Maybe only a slight change. I try to find an info but still isnt clear. Such as how many bag/litre per week? How often/how many days per week? is it just the regular saline they usually infuse you through your arms, veins when you diarrhea? If you have to do it for long i think its hard if you have to keep going to hospital and getting infusion almost everyday for hours. Wouldnt that caused trouble to the veins? Otherwise you require to buy the device/port at home? Quote Edit
  24. Could someone help how much you should get a week for iv fluid? I try to find an info but still isnt clear. Such as how many bag/litre per week? How often/how many days per week? If you have to do it for long i think its hard if you have to keep going to hospital and getting infusion almost everyday for hours. Wouldnt that caused trouble to the veins? Otherwise you require to buy the device at home?
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