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Everything posted by Achilles2323

  1. oh i have watched it =) when i was first diagnosed 4 months ago i really hope she can bring me and my family answers gonna make the 10 hour drive there.
  2. has any 1 ever seen her ? or heard how she is ? i finally made an appointment and i am hoping she can put it all together for me =/
  3. Thank you tryptase in blood, N-methylhistamine in urine, heparin in blood, chromogranin A in blood, or other specific mast cell mediators such as Prostaglandin D2 or leukotrienes That looks like the last test Will ask my doctor
  4. OK what I have gathered so far is 1.24 Hour Urine N-Methyl-Histamine Test 2.tryptase blood test Anymore that can help ?
  5. The only reason I make my own posts is because when I use the search bar it doesn't work....my phone is rewlly old .... All I need to know is the name of the test to diagnose mast cell
  6. Thank you Whats the name of the 24 hour urine test ?
  7. how do you diagnose MCAS ? i understand its complicated but are there tests for it ? besides tryptase blood test ?
  8. What test is used to diagnose mast cell issues ?
  9. has any 1 ever tried neurofeedback ? not sure if i should do it or not ?
  10. help me out i saw a neuro today he did an SSR TEST Sympathetic Skin Response he wants to do a 2 day EEG he is ordering a xray on cervical thorac and lumber spine he told me he wants to do neuro feedback ? is this any good ? is it dangerous ? and does it work ? any help ?
  11. i am on atenelol midodrine doxazosin and klonopin never took florinef but my potassium is always low for some odd reason even tho i eat bananas and drink Gatorade every day i have had POTS for 4 months so i am not sure as what caused it because it just came on out of the blue but i kind of hope its not hyper because i heard its harder to treat and will not have a chance to go away as pots with no underlying condition can go away is what i am hoping for but this blood cat test should do it.. 30 min rest take blood and then 30 min standing up and take blood correct ?
  12. mmm bananas interesting i eat 2 a day lol guess i should stop before the test
  13. ok thank you would being on meds effect the .catecholamine blood test ???
  14. What are the symptoms between hyper pots and regular pots ?
  15. I don't have the money :/ Trying my best to find out wuts going on Hospital told me I have orthostatic hypertension the other day I am trying to find out if I have hyper pots .....so lost at the moment No 1 has found the cause and I suspect I I have hyper pots with the increase in bp upon standing I need a pots doctor in NYC
  16. so the only way to diagnose hyperadrneic POTS IS with a plasma catecholamines test. ?
  17. is there a print out i can take to my PC doctor so i can tell him i need this test? plasma catecholamines test NE/catecholamines test when i did my TTT they did not take blood and had me on my meds =/ not sure it came back rite
  18. ok so lay down for 30 min then take blood then stand for 30 min and take blood again? is this the only way to diagnose hyper pots ? i dont have the luxury of doctor grubb =/
  19. so there is POTS & Hypergeneric POTS ? what other types of POTS are there if any?
  20. So 24 hr urine cannot diagnose this ?
  21. how do they diagnose Hypergeneric POTS ?
  22. How do I go to that 1 week program ? Where they look for whats causing your POTS??? Anyone have any idea ? A number ?
  23. Any 1 know of any good Genetics doctors in the area of NYC ?
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