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Hi Everyone, We’re ON! The lab will test ten of us for the registry, so I need to be SURE we hit the right population. If you have EDS (or likely EDS) and POTS (a poor man’s tilt table for confirmation is fine), and you are NOT yet taking Diamox or Topamax, or Cromolyn sodium or Ketotifen, AND if you are able to go off of all antihistamines (don’t kill yourself doing this, obviously), you may be eligible. This is about $1,000 worth of blood tests that may show what’s happening in our blood. You don’t need to travel. Your own doctor can order the test and you can have the blood drawn at your doc’s office, or at a draw station they have that may be nearby (and they are well trained as to the care and feeding of this blood sample. It must be over-nighted to the lab, so the sample is usually only taken on Tues, Wed, and Thursdays. If you think you may qualify, please email me at “volunteers@prettyill.com” and let me know you are contacting me about the blood registry, OK? We’ll get your consent, and I’ll have a few questions for you. HYPERADRENERGIC POTS patients may be especially GREAT to look at. This is exciting stuff, my friends! Depending upon what we see in these first 10 patients, then we’ll open it up to a larger group. If you, or someone you may know may qualify, please contact me. Making history… Big hug, 🙂 Diana
Hi Dr. Diana, I’ll be emailing you about this too. I think I might qualify. I was diagnosed with dysautonomia but was never told the exact form of it so I’ll be checking with my doc about that. You can’t get rid of me now. 😉
Megha
Hi Diana,
Wow fantastic news. Shame it has to be an overnight shipping! Would have happily volunteered. Thank you again for all that you are doing, Al & Jill
Hi Dr. Diana, I’ll be emailing you about this too. I think I might qualify. I was diagnosed with dysautonomia but was never told the exact form of it so I’ll be checking with my doc about that. You can’t get rid of me now. 😉
Megha
Most of us with hyperadrenergic POTS KNOW we are hyperadrenergic! Our norepi levels go through the roof after standing for 10 minutes. But it is not essential that you know what type you are. I just want the very SICK ones to be tested. 🙂 Assuming the first 10 show what I think they’ll show, then we’ll get to expand the study. Cool? 🙂 Diana
Hi Diana,
Wow fantastic news. Shame it has to be an overnight shipping! Would have happily volunteered. Thank you again for all that you are doing, Al & Jill
HI Guys!! Yea, it IS a bummer. I can’t help but think that we’d see “blood work gone wild” with you two! Big hug, Diana
Just wanted to add that most labs will overnight it themselves. We’ve been to two labs and both have overnighted it with their shipments. You want to call and ask when pick up is and just go before then. Most don’t even need an appointment once you (or your doctor) have the kit.
Damn. I SO want to do this but am already on diamox. I could ditch the antihistamines, but not the diamox. Guess that means I am out, huh?
Hi Dr. Diana, I’ll be emailing you about this too. I think I might qualify. I was diagnosed with dysautonomia but was never told the exact form of it so I’ll be checking with my doc about that. You can’t get rid of me now. 😉
Megha
Most of us with hyperadrenergic POTS KNOW we are hyperadrenergic! Our norepi levels go through the roof after standing for 10 minutes. But it is not essential that you know what type you are. I just want the very SICK ones to be tested. 🙂 Assuming the first 10 show what I think they’ll show, then we’ll get to expand the study. Cool? 🙂 Diana
I think my mom would be a great fit for this one but she’s been on topomax for headaches. Would it work if she went off it for the trial?
Hi Dr. Diana, I’ll be emailing you about this too. I think I might qualify. I was diagnosed with dysautonomia but was never told the exact form of it so I’ll be checking with my doc about that. You can’t get rid of me now. 😉
Megha
Most of us with hyperadrenergic POTS KNOW we are hyperadrenergic! Our norepi levels go through the roof after standing for 10 minutes. But it is not essential that you know what type you are. I just want the very SICK ones to be tested. 🙂 Assuming the first 10 show what I think they’ll show, then we’ll get to expand the study. Cool? 🙂 Diana
Turns out I do have POTS. I guess that’s why I can’t last 5 minutes on the treadmill when they do the stress test. Lol.
Let me know if I can participate in the study. I’m ready and willing. 🙂
Hello everyone!I just wanted to chime in for a second here and introduce myself. I am Tennille Shipley, and I will be helping Dr. Diana with coordinating the Blood Registry. Such an amazing opportunity! A huge thank you to Dr. Diana for pushing for this for us 🙂 And a huge thank you for those who will be volunteering their blood 🙂
I have already responded to all of you who have emailed so far. As each email comes in to Dr. Diana, I will respond to each of you personally.
Again and again a deep Thank you to Dr. Diana for allowing me to be a part of this and pushing for so much for us! It is wonderful and refreshing to see so many working together 🙂
Anyways, I wanted to quickly introduce myself so that those of you who participate can sort of ‘meet’ me on here and at least see what I look like :0) As that always helps in relating to folks. 🙂
Many Blessings everyone!
Tennille Shipley from TN 😉
I am new here today. I think my son would be very good for this. He is 19, has EDS III (Diagnosed by Dr. Francomano), and was diagnosed at Duke with POTS by a cardiologist. He is not on any of the drugs you mentioned. He is very sick, housebound for about 2 years now. I don’t know about MCAD yet…just heard of it.
I will send an e-mail.
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