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Jessica

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  1. Ok, perfect! I have a list of physicians and I’m planning to go through and see who I can get in with the soonest. Thanks again.
  2. Callie&Toby - do you mind sharing the dysautonomia specialist you saw in Jacksonville? I am looking for one in the area.
  3. Hi Elaine! I am also a former competitive swimmer. I recently was swimming with a master's group until a really bad flare up. I just wanted to say hi since you were asking if there other swimmers out there. Have you had you appointment yet? I am in FL, so thinking of seeing Dr. Snapper as well. I was supposed to do an open water swim in December, but due to this recent flare, I am not sure if it will happen or not.
  4. I also have this and have varying levels of migraine pain daily. I have had it since July of this year. I just started a calcium channel blocker for some heart issues and I'm hoping that might help with the migraines too. If anyone finds anything that helps, please post about it!
  5. Hi Morgan! Woah- what a story! I'm not glad that you're back, but I'm happy we've gotten to interact and I look forward to getting to know you better. Wishing you and your son the very best!
  6. Hmmm... I'm not entirely sure, but I think they usually look at the ANA in combination with other tests. For example, I have a positive ANA. However, since all of my other tests run come back negative, they say I don't have an autoimmune disorder. Hope that helps or that someone who knows more can chime in ?
  7. That does sound scary and I'm glad your doctors are responding to your concerns. I hope you get some answers soon!
  8. Momandmore - Sounds like you might be around where I grew up. Messaging you now! :-)
  9. Hi mom&more! I wish that doctor would coordinate everything, but I've had a hard time getting ahold of him. I made a judgement call and decided to reschedule the autonomic testing because I honestly don't feel comfortable going through with it until the cardiac MRI is complete. I think VT can be much more serious if there are structural problems with the heart, which so far hasn't been proven with me. However, there is a possibility I have this genetic cardiomyopathy, so that is the reason for the upcoming MRI. That is interesting about the tilt table. There actually is a doctor that was recommended to me that does not have an autonomic lab, but does the "poor man's version". Are you near CHOP? The only reason I ask is because we just took my daughter there to see a specialist recently. It was for something unrelated to all of this though :-)
  10. Hi Sarah! Thanks for the info. Is IST when your heart rate is just really fast when lying down? Mine is generally at a normal rate and will then shoot up randomly. I think a big part of that is these different arrhythmias that I have going on, although I don't think that is all of it because lots of times I will feel faint or "off" in the absence of an arrhythmia. Is there a specific test for IST?
  11. Stephanie - I have all of these neuropathy symptoms too! They can be so disturbing!
  12. That's wonderful! I need to find a doctor like that! I'm so glad you did :-)
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