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kisekis

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About kisekis

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  1. 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 😕
  2. 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??
  3. 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 )
  4. 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.
  5. 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?
  6. 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
  7. 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?
  8. I read many says it related to dysautonomia. Dr Gupta also explain its because the sympathetic nerve problem and during sleep it will get triggers. I get this too a lot. But im confused cause in POTS info they dont list this as the symptoms. So people only know that pots only happens when standing. Not supine. So if someone get it while laying down they will say they dont have pots due to it It confused me???
  9. @Pistol @StayAtHomeMom Thanks a lot for the reply and info. For the cathecolamine test, shouldnt the symptoms have to be, epinerphrine rush everyday? What if i dont get it but only occasionally, there are times when i dont get it for days? I usually get surge contribute to sleep/when sleeping. The ANA test brought me back when googled and read many research said that betablocker could raise antibody/autoimmune. When you test it do you take long term BB? I worried since it said BB could induced autoimmune. And wonder if mine test positive becauase of it. But i also read that autoimmune could be the culprit of pots. But it came out positive low though its long time ago. May i know the tests in autonomic testing are? Neuro evaluation, nerve study, those arent familiar to me. Stress echo test seems important but i never got it. Only the ecg stress test. An autonomic specialist supposed to be different than the regular neurologist right? Seems like the regular neurologist more knowledge in pinch nerve, stroke and stuff like that. At least thats what i see here
  10. Thanks everyone for the reply. Im still confused. @joiedevivrehow to rule out the condition? I can only get standard test many advanced test arent available @StayAtHomeMomi see but thats also depends on what we eat/consume right? so theres no baseline to see how much it affected the result? We just eat/consume our normal salt, potassium? @bombsh3ll i see like you said its also depends on how much we drink. Shouldnt there be a baseline for that? Or we should write it down...? Is it the standard aldoesterone blood test and plasma renin blood test? Or the more advanced ones? Cause people say test like ace angiotensin but i dont think its available.
  11. Hello. I have questions related to sodium and potassium. Hope there will be some answers. So for urine 24 hours test wouldnt the result depend most on what we consume? How would it check how much we can ratain water. Also if theres no baseline on how much we should consume during the test? Im also confused finding the right ratio for potassium sodium since the serum test isnt reliable. Since theres also research and discussion here saying salt load will decrease aldoesterone(bad) and decrease potassium, increase adrenaline cortisol. I get complicated result from salt load. Also balancing mineral is complicated too such as magnesium calcium. Cause too much of 1 could cause problem. I also read there are a few people here who doesnt do good with salt load depends on their condition. Trying increase each one and feel the difference in our own also hard for me cause my body is just weird. Hard to identified. Anybody has an idea/tips? I cant get the blood volume test and mineral in cell test. Would the 24 hours urine and blood sodium potassium, plasma renin activity, aldoesterone blood test reliable to detect low blood volume, electrolyte issue? Thank you for whoever reply
  12. @Pistol @StayAtHomeMom @KiminOrlando Thank you so much for the helpfull information. Unfortunately i dont live in US. I live in southeast asia some doctors ive seen dont know about pots. I just got betablocker. I try to get test and diagnosis. But i dont know which test available here. Maybe just the standard one. I read about autoimmune test, aldoesterone renin, blood cathecolamine, urine electrolyte? Which are the important tests? I usually just check for serum potassium sodium magnesium calium. Was pots also affecting adrenal insulin? Cause sometimes i get hypoglycemic symptoms randomly but it doesnt happen a lot. My vit d is below normal and anna test is possitive 1 but doctor said its because im low n vit d. I thought dehydration sign is crack lips? Cause i already drink tons of water but still... i havent got endoscopy cause im worried about the anesthesia 😕 i go on a diet that stay away from problematic food.
  13. Hello.. Can i get some enlightenment please.. I have pots condition more than 15 years. it happens quite a lot too. (HR 30-40bpm more than 100bpm from supine to standing) But there are days/weeks where it doesnt happen or it got better. when my overall condition better/more fit/healthier. But when i get a little unwell/worse it appears. Problem is the condition is not known here, theres no specialist of Pots. So im clueless. if i try to talk to them they usually say i dont have pots cause sometimes i dont get symptomatic. also im confused cause the heart issues often happen when sleeping/after sleeping/woken up. Although i read that dysautonomia can caused it too. Other than pots i also have other issues like. Muscle joints pain, digestive issues, food/chemical sensitivities/intolerances, tightband on waist, constant cracked lips, apnea, temperature issue, vertigo, insomnia etc. Thank you for whoever reply.
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